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Low Health Literacy Among Older Americans: How Do You Make Proper Health Care Decisions?
Reporter: Aviva Lev-Ari, PhD, RN
More than half of older Americans have “basic” or “below basic” health literacy. How do you make health care decisions when you don’t even understand what the doctor is saying?
From The New York Times
This Type of Illiteracy Could Hurt You
More than half of older Americans lack the skills to gather and understand medical information. Providers must simplify, researchers say.
Every time her parents pick up a new prescription at a Walgreens in Houston, they follow Duyen Pham-Madden’s standing instructions: Use the iPad she bought for them, log onto FaceTime, hold up the pill bottles for her examination.
Her mother, 79, and father, 77, need numerous medications, but have trouble grasping when and how to take them.
The label may say to take one pill three times a day, but “my dad might take one a day,” said Ms. Pham-Madden, 56, an insurance purchasing agent in Blue Springs, Mo. “Or take three at a time.”
So she interprets the directions for them, also reminding her mother to take the prescribed megadose of vitamin D, for osteoporosis, only weekly, not daily.
Part of their struggle, Ms. Pham-Madden believes, stems from language barriers. The family emigrated from Vietnam in 1975, and while her parents speak and read English, they lack the fluency of native speakers.
But recently, Ms. Pham-Madden said, her father posed a question that anyone grappling with Medicare drug coverage might ask: “What’s the doughnut hole?”
Researchers refer to this type of knowledge as “health literacy,” meaning a person’s ability to obtain and understand the basic information needed to make appropriate health decisions.
Can someone read a pamphlet and then determine how often to undergo a particular medical test? Look at a graph and recognize a normal weight range for her height? Ascertain whether her insurance will cover a certain procedure?
Most American adults — 53 percent — have intermediate health literacy, a national survey found in 2006; they can perform “moderately challenging” activities, like reading denser texts and handling unfamiliar arithmetic.
Just 12 percent rank as “proficient,” the highest category. About a fifth have “basic” health literacy that could cause problems, and 14 percent score “below basic.” Health literacy differs by education level, race, poverty and other factors.
And it varies dramatically by age. While the proportion of adults with intermediate literacy ranges from 53 to 58 percent in other age groups, it falls to 38 percent among those 65 and older. The percentage of older adults with basic or below basic literacy is higher than in any other age group; only 3 percent qualify as proficient.
Why is that? Compared to younger groups, the current generation of “older adults were less likely to go beyond a high school education,” said Jennifer Wolff, a health services researcher at Johns Hopkins University.
Moreover, “as adults age, they’re more likely to experience cognitive impairment,” she pointed out, as well as hearing and vision loss that can affect their comprehension.
Consider the recent experience of a retired 84-year-old teacher. All her life, “she was very detail-oriented” and competent, said her daughter, Deborah Johnson, who lives in Lansing, Mich.
But a neurologist diagnosed mild cognitive impairment last summer and prescribed a drug intended to ameliorate its symptoms. It caused a frightening reaction — personality changes, lethargy, dizziness, sky-high blood pressure.
Ms. Johnson thinks her mother might have overdosed. “She told me she thought, ‘This is going to fix me, and I’ll be O.K. So if I take more pills, I’ll be O.K. faster.’”
Yet health literacy can be particularly crucial for seniors. They’re usually coping with more complicated medical problems, including multiple chronic diseases, an array of drugs, a host of specialists. They have more instructions to decipher, more tests to schedule, more decisions to ponder.
Low health literacy makes those tasks more difficult, with troubling results. Studies indicate that people with low literacy have poorer health at higher cost. They’re less likely to take advantage of preventive tests and immunizations, and more apt to be hospitalized.
It may not help much that future cohorts of older adults will be better educated. “The demands of interacting with the health care system are increasing,” Dr. Wolff said. “Ask any adult child of a parent who’s been hospitalized. The system has gotten increasingly complex.”
That doesn’t mean patients deserve all the blame for misunderstandings and snafus. Rima Rudd, a longtime health literacy researcher at Harvard University, has persistently criticized the communications skills of health institutions and professionals.
“We give people findings and tell them about risk and expect people to make decisions based on those concepts, but we don’t explain them very well,” she said. “Are our forms readable? Are the directions after surgery written coherently? If it’s written in jargon, with confusing words and numbers, you won’t get the gist of it and you won’t get important information.”
A few years ago, Steven Rosen, 64, had spent more than two months at a Chicago hospital after several surgeries. Then a social worker came into his room and told his wife Dorothy, “You have to move him tomorrow to an L.T.A.C.”
“I don’t know what you’re talking about,” Ms. Rosen recalled saying. “What’s an L.T.A.C.?”
Question: Was she demonstrating inadequate health literacy, or should the social worker have clarified that L.T.A.C.s — long-term acute care hospitals — provide more care than nursing homes for very ill patients?
Aware of such issues, health care organizations are scrambling to try to make information more accessible and intelligible, and to help patients of all ages understand an often bewildering environment.
They’re hiring squadrons of care coordinators and navigators (sometimes too many), and redesigning and rewriting pamphlets and forms. They’re teaching medical students to communicate more clearly and to encourage patients’ questions.
They’re turning to technology, like secure websites where both patients and family members can see test results or ask questions.
“It’s not the silver bullet we hoped for,” said Amy Chesser, a health communications researcher at Wichita State University, pointing out that many patients are reluctant to turn to provider websites. But the potential remains.
For now, though, often the primary health literacy navigators for older people are their adult children, most commonly daughters and daughters-in-law.
“In the best of all worlds, she’d just be the daughter,” Dr. Chesser said. “But we need her to serve other roles — being an advocate, asking a lot of questions of the provider, asking where to go for information, talking about second opinions.”
The current cohort of people over 70 grew up in a more patriarchal medical system and asking fewer questions, Dr. Wolff pointed out. Her research shows that while most seniors manage their own health care, about a third prefer to co-manage with family or close friends, or to delegate health matters to family or doctors.
Duyen Pham-Madden plays the co-managerial role from hundreds of miles away, keeping spreadsheets of her parents’ drugs, compiling lists of questions for doctors’ appointments, texting photos to pharmacists when the pills in a refilled prescription look different from the last batch.
She’d probably score well in health literacy, but “sometimes even I get mixed up,” she said.
What’s the Medicare doughnut hole? “I had to look it up,” she said. Once she did, she wondered, “How do they expect seniors to understand this?”
Can Blockchain Technology and Artificial Intelligence Cure What Ails Biomedical Research and Healthcare, Volume 2 (Volume Two: Latest in Genomics Methodologies for Therapeutics: Gene Editing, NGS and BioInformatics, Simulations and the Genome Ontology), Part 1: Next Generation Sequencing (NGS)
Can Blockchain Technology and Artificial Intelligence Cure What Ails Biomedical Research and Healthcare
Curator: Stephen J. Williams, Ph.D.
Updated 12/18/2018
In the efforts to reduce healthcare costs, provide increased accessibility of service for patients, and drive biomedical innovations, many healthcare and biotechnology professionals have looked to advances in digital technology to determine the utility of IT to drive and extract greater value from healthcare industry. Two areas of recent interest have focused how best to use blockchain and artificial intelligence technologies to drive greater efficiencies in our healthcare and biotechnology industries.
More importantly, with the substantial increase in ‘omic data generated both in research as well as in the clinical setting, it has become imperative to develop ways to securely store and disseminate the massive amounts of ‘omic data to various relevant parties (researchers or clinicians), in an efficient manner yet to protect personal privacy and adhere to international regulations. This is where blockchain technologies may play an important role.
A recent Oncotarget paper by Mamoshina et al. (1) discussed the possibility that next-generation artificial intelligence and blockchain technologies could synergize to accelerate biomedical research and enable patients new tools to control and profit from their personal healthcare data, and assist patients with their healthcare monitoring needs. According to the abstract:
The authors introduce new concepts to appraise and evaluate personal records, including the combination-, time- and relationship value of the data. They also present a roadmap for a blockchain-enabled decentralized personal health data ecosystem to enable novel approaches for drug discovery, biomarker development, and preventative healthcare. In this system, blockchain and deep learning technologies would provide the secure and transparent distribution of personal data in a healthcare marketplace, and would also be useful to resolve challenges faced by the regulators and return control over personal data including medical records to the individual.
The review discusses:
Recent achievements in next-generation artificial intelligence
Basic concepts of highly distributed storage systems (HDSS) as a preferred method for medical data storage
Open source blockchain Exonium and its application for healthcare marketplace
A blockchain-based platform allowing patients to have control of their data and manage access
How advances in deep learning can improve data quality, especially in an era of big data
Advances in Artificial Intelligence
Integrative analysis of the vast amount of health-associated data from a multitude of large scale global projects has proven to be highly problematic (REF 27), as high quality biomedical data is highly complex and of a heterogeneous nature, which necessitates special preprocessing and analysis.
Increased computing processing power and algorithm advances have led to significant advances in machine learning, especially machine learning involving Deep Neural Networks (DNNs), which are able to capture high-level dependencies in healthcare data. Some examples of the uses of DNNs are:
Prediction of drug properties(2, 3) and toxicities(4)
Generative Adversarial Networks (https://arxiv.org/abs/1406.2661): requires good datasets for extensive training but has been used to determine tumor growth inhibition capabilities of various molecules (7)
Recurrent neural Networks (RNN): Originally made for sequence analysis, RNN has proved useful in analyzing text and time-series data, and thus would be very useful for electronic record analysis. Has also been useful in predicting blood glucose levels of Type I diabetic patients using data obtained from continuous glucose monitoring devices (8)
Transfer Learning: focused on translating information learned on one domain or larger dataset to another, smaller domain. Meant to reduce the dependence on large training datasets that RNN, GAN, and DNN require. Biomedical imaging datasets are an example of use of transfer learning.
One and Zero-Shot Learning: retains ability to work with restricted datasets like transfer learning. One shot learning aimed to recognize new data points based on a few examples from the training set while zero-shot learning aims to recognize new object without seeing the examples of those instances within the training set.
Highly Distributed Storage Systems (HDSS)
The explosion in data generation has necessitated the development of better systems for data storage and handling. HDSS systems need to be reliable, accessible, scalable, and affordable. This involves storing data in different nodes and the data stored in these nodes are replicated which makes access rapid. However data consistency and affordability are big challenges.
Blockchain is a distributed database used to maintain a growing list of records, in which records are divided into blocks, locked together by a crytosecurity algorithm(s) to maintain consistency of data. Each record in the block contains a timestamp and a link to the previous block in the chain. Blockchain is a distributed ledger of blocks meaning it is owned and shared and accessible to everyone. This allows a verifiable, secure, and consistent history of a record of events.
Data Privacy and Regulatory Issues
The establishment of the Health Insurance Portability and Accountability Act (HIPAA) in 1996 has provided much needed regulatory guidance and framework for clinicians and all concerned parties within the healthcare and health data chain. The HIPAA act has already provided much needed guidance for the latest technologies impacting healthcare, most notably the use of social media and mobile communications (discussed in this article Can Mobile Health Apps Improve Oral-Chemotherapy Adherence? The Benefit of Gamification.). The advent of blockchain technology in healthcare offers its own unique challenges however HIPAA offers a basis for developing a regulatory framework in this regard. The special standards regarding electronic data transfer are explained in HIPAA’s Privacy Rule, which regulates how certain entities (covered entities) use and disclose individual identifiable health information (Protected Health Information PHI), and protects the transfer of such information over any medium or electronic data format. However, some of the benefits of blockchain which may revolutionize the healthcare system may be in direct contradiction with HIPAA rules as outlined below:
Issues of Privacy Specific In Use of Blockchain to Distribute Health Data
Blockchain was designed as a distributed database, maintained by multiple independent parties, and decentralized
Linkage timestamping; although useful in time dependent data, proof that third parties have not been in the process would have to be established including accountability measures
Blockchain uses a consensus algorithm even though end users may have their own privacy key
Applied cryptography measures and routines are used to decentralize authentication (publicly available)
Blockchain users are divided into three main categories: 1) maintainers of blockchain infrastructure, 2) external auditors who store a replica of the blockchain 3) end users or clients and may have access to a relatively small portion of a blockchain but their software may use cryptographic proofs to verify authenticity of data.
YouTube video on How #Blockchain Will Transform Healthcare in 25 Years (please click below)
In Big Data for Better Outcomes, BigData@Heart, DO->IT, EHDN, the EU data Consortia, and yes, even concepts like pay for performance, Richard Bergström has had a hand in their creation. The former Director General of EFPIA, and now the head of health both at SICPA and their joint venture blockchain company Guardtime, Richard is always ahead of the curve. In fact, he’s usually the one who makes the curve in the first place.
Please click on the following link for a podcast on Big Data, Blockchain and Pharma/Healthcare by Richard Bergström:
Mamoshina, P., Ojomoko, L., Yanovich, Y., Ostrovski, A., Botezatu, A., Prikhodko, P., Izumchenko, E., Aliper, A., Romantsov, K., Zhebrak, A., Ogu, I. O., and Zhavoronkov, A. (2018) Converging blockchain and next-generation artificial intelligence technologies to decentralize and accelerate biomedical research and healthcare, Oncotarget9, 5665-5690.
Aliper, A., Plis, S., Artemov, A., Ulloa, A., Mamoshina, P., and Zhavoronkov, A. (2016) Deep Learning Applications for Predicting Pharmacological Properties of Drugs and Drug Repurposing Using Transcriptomic Data, Molecular pharmaceutics13, 2524-2530.
Wen, M., Zhang, Z., Niu, S., Sha, H., Yang, R., Yun, Y., and Lu, H. (2017) Deep-Learning-Based Drug-Target Interaction Prediction, Journal of proteome research16, 1401-1409.
Gao, M., Igata, H., Takeuchi, A., Sato, K., and Ikegaya, Y. (2017) Machine learning-based prediction of adverse drug effects: An example of seizure-inducing compounds, Journal of pharmacological sciences133, 70-78.
Putin, E., Mamoshina, P., Aliper, A., Korzinkin, M., Moskalev, A., Kolosov, A., Ostrovskiy, A., Cantor, C., Vijg, J., and Zhavoronkov, A. (2016) Deep biomarkers of human aging: Application of deep neural networks to biomarker development, Aging8, 1021-1033.
Vandenberghe, M. E., Scott, M. L., Scorer, P. W., Soderberg, M., Balcerzak, D., and Barker, C. (2017) Relevance of deep learning to facilitate the diagnosis of HER2 status in breast cancer, Scientific reports7, 45938.
Kadurin, A., Nikolenko, S., Khrabrov, K., Aliper, A., and Zhavoronkov, A. (2017) druGAN: An Advanced Generative Adversarial Autoencoder Model for de Novo Generation of New Molecules with Desired Molecular Properties in Silico, Molecular pharmaceutics14, 3098-3104.
Ordonez, F. J., and Roggen, D. (2016) Deep Convolutional and LSTM Recurrent Neural Networks for Multimodal Wearable Activity Recognition, Sensors (Basel)16.
December 5, 2018 | The boom of blockchain and distributed ledger technologies have inspired healthcare organizations to test the capabilities of their data. Quest Diagnostics, in partnership with Humana, MultiPlan, and UnitedHealth Group’s Optum and UnitedHealthcare, have launched a pilot program that applies blockchain technology to improve data quality and reduce administrative costs associated with changes to healthcare provider demographic data.
The collective body, called Synaptic Health Alliance, explores how blockchain can keep only the most current healthcare provider information available in health plan provider directories. The alliance plans to share their progress in the first half of 2019.
Providing consumers looking for care with accurate information when they need it is essential to a high-functioning overall healthcare system, Jason O’Meara, Senior Director of Architecture at Quest Diagnostics, told Clinical Informatics News in an email interview.
“We were intentional about calling ourselves an alliance as it speaks to the shared interest in improving health care through better, collaborative use of an innovative technology,” O’Meara wrote. “Our large collective dataset and national footprints enable us to prove the value of data sharing across company lines, which has been limited in healthcare to date.”
O’Meara said Quest Diagnostics has been investing time and resources the past year or two in understanding blockchain, its ability to drive purpose within the healthcare industry, and how to leverage it for business value.
“Many health care and life science organizations have cast an eye toward blockchain’s potential to inform their digital strategies,” O’Meara said. “We recognize it takes time to learn how to leverage a new technology. We started exploring the technology in early 2017, but we quickly recognized the technology’s value is in its application to business to business use cases: to help transparently share information, automate mutually-beneficial processes and audit interactions.”
Quest began discussing the potential for an alliance with the four other companies a year ago, O’Meara said. Each company shared traits that would allow them to prove the value of data sharing across company lines.
“While we have different perspectives, each member has deep expertise in healthcare technology, a collaborative culture, and desire to continuously improve the patient/customer experience,” said O’Meara. “We also recognize the value of technology in driving efficiencies and quality.”
Following its initial launch in April, Synaptic Health Alliance is deploying a multi-company, multi-site, permissioned blockchain. According to a whitepaper published by Synaptic Health, the choice to use a permissioned blockchain rather than an anonymous one is crucial to the alliance’s success.
“This is a more effective approach, consistent with enterprise blockchains,” an alliance representative wrote. “Each Alliance member has the flexibility to deploy its nodes based on its enterprise requirements. Some members have elected to deploy their nodes within their own data centers, while others are using secured public cloud services such as AWS and Azure. This level of flexibility is key to growing the Alliance blockchain network.”
As the pilot moves forward, O’Meara says the Alliance plans to open ability to other organizations. Earlier this week Aetna and Ascension announced they joined the project.
“I am personally excited by the amount of cross-company collaboration facilitated by this project,” O’Meara says. “We have already learned so much from each other and are using that knowledge to really move the needle on improving healthcare.”
November 29, 2018 | The US Department of Health and Human Services (HHS) is making waves in the blockchain space. The agency’s Division of Acquisition (DA) has developed a new system, called Accelerate, which gives acquisition teams detailed information on pricing, terms, and conditions across HHS in real-time. The department’s Associate Deputy Assistant Secretary for Acquisition, Jose Arrieta, gave a presentation and live demo of the blockchain-enabled system at the Distributed: Health event earlier this month in Nashville, Tennessee.
Accelerate is still in the prototype phase, Arrieta said, with hopes that the new system will be deployed at the end of the fiscal year.
HHS spends around $25 billion a year in contracts, Arrieta said. That’s 100,000 contracts a year with over one million pages of unstructured data managed through 45 different systems. Arrieta and his team wanted to modernize the system.
“But if you’re going to change the way a workforce of 20,000 people do business, you have to think your way through how you’re going to do that,” said Arrieta. “We didn’t disrupt the existing systems: we cannibalized them.”
The cannibalization process resulted in Accelerate. According to Arrieta, the system functions by creating a record of data rather than storing it, leveraging machine learning, artificial intelligence (AI), and robotic process automation (RPA), all through blockchain data.
“We’re using that data record as a mechanism to redesign the way we deliver services through micro-services strategies,” Arrieta said. “Why is that important? Because if you have a single application or data use that interfaces with 55 other applications in your business network, it becomes very expensive to make changes to one of the 55 applications.”
Accelerate distributes the data to the workforce, making it available to them one business process at a time.
“We’re building those business processes without disrupting the existing systems,” said Arrieta, and that’s key. “We’re not shutting off those systems. We’re using human-centered design sessions to rebuild value exchange off of that data.”
The first application for the system, Arrieta said, can be compared to department stores price-matching their online competitors.
It takes the HHS close to a month to collect the amalgamation of data from existing system, whether that be terms and conditions that drive certain price points, or software licenses.
“The micro-service we built actually analyzes that data, and provides that information to you within one second,” said Arrieta. “This is distributed to the workforce, to the 5,000 people that do the contracting, to the 15,000 people that actually run the programs at [HHS].”
This simple micro-service is replicated on every node related to HHS’s internal workforce. If somebody wants to change the algorithm to fit their needs, they can do that in a distributed manner.
Arrieta hopes to use Accelerate to save researchers money at the point of purchase. The program uses blockchain to simplify the process of acquisition.
“How many of you work with the federal government?” Arrieta asked the audience. “Do you get sick of reentering the same information over and over again? Every single business opportunity you apply for, you have to resubmit your financial information. You constantly have to check for validation and verification, constantly have to resubmit capabilities.”
Wouldn’t it be better to have historical notes available for each transaction? said Arrieta. This would allow clinical researchers to be able to focus on “the things they’re really good at,” instead of red tape.
“If we had the top cancer researcher in the world, would you really want her spending her time learning about federal regulations as to how to spend money, or do you want her trying to solve cancer?” Arrieta said. “What we’re doing is providing that data to the individual in a distributed manner so they can read the information of historical purchases that support activity, and they can focus on the objectives and risks they see as it relates to their programming and their objectives.”
Blockchain also creates transparency among researchers, Arrieta said, which says creates an “uncomfortable reality” in the fact that they have to make a decision regarding data, fundamentally changing value exchange.
“The beauty of our business model is internal investment,” Arrieta said. For instance, the HHS could take all the sepsis data that exists in their system, put it into a distributed ledger, and share it with an external source.
“Maybe that could fuel partnership,” Arrieta said. “I can make data available to researchers in the field in real-time so they can actually test their hypothesis, test their intuition, and test their imagination as it relates to solving real-world problems.”
Blockchain-based genomic data hub platform Shivom recently reached its $35 million hard cap within 15 seconds of opening its main token sale. Shivom received funding from a number of crypto VC funds, including Collinstar, Lateral, and Ironside.
The goal is to create the world’s largest store of genomic data while offering an open web marketplace for patients, data donors, and providers — such as pharmaceutical companies, research organizations, governments, patient-support groups, and insurance companies.
“Disrupting the whole of the health care system as we know it has to be the most exciting use of such large DNA datasets,” Shivom CEO Henry Ines told me. “We’ll be able to stratify patients for better clinical trials, which will help to advance research in precision medicine. This means we will have the ability to make a specific drug for a specific patient based on their DNA markers. And what with the cost of DNA sequencing getting cheaper by the minute, we’ll also be able to sequence individuals sooner, so young children or even newborn babies could be sequenced from birth and treated right away.”
While there are many solutions examining DNA data to explain heritage, intellectual capabilities, health, and fitness, the potential of genomic data has largely yet to be unlocked. A few companies hold the monopoly on genomic data and make sizeable profits from selling it to third parties, usually without sharing the earnings with the data donor. Donors are also not informed if and when their information is shared, nor do they have any guarantee that their data is secure from hackers.
Shivom wants to change that by creating a decentralized platform that will break these monopolies, democratizing the processes of sharing and utilizing the data.
“Overall, large DNA datasets will have the potential to aid in the understanding, prevention, diagnosis, and treatment of every disease known to mankind, and could create a future where no diseases exist, or those that do can be cured very easily and quickly,” Ines said. “Imagine that, a world where people do not get sick or are already aware of what future diseases they could fall prey to and so can easily prevent them.”
Shivom’s use of blockchain technology and smart contracts ensures that all genomic data shared on the platform will remain anonymous and secure, while its OmiX token incentivizes users to share their data for monetary gain.
Blockchain will secure the DNA database for 50 million citizens in the eighth-largest state in India. The government of Andhra Pradesh signed a Memorandum of Understanding with a German genomics and precision medicine start-up, Shivom, which announced to start the pilot project soon. The move falls in line with a trend for governments turning to population genomics, and at the same time securing the sensitive data through blockchain.
Andhra Pradesh, DNA, and blockchain
Storing sensitive genetic information safely and securely is a big challenge. Shivom builds a genomic data-hub powered by blockchain technology. It aims to connect researchers with DNA data donors thus facilitating medical research and the healthcare industry.
With regards to Andhra Pradesh, the start-up will first launch a trial to determine the viability of their technology for moving from a proactive to a preventive approach in medicine, and towards precision health. “Our partnership with Shivom explores the possibilities of providing an efficient way of diagnostic services to patients of Andhra Pradesh by maintaining the privacy of the individual data through blockchain technologies,” said J A Chowdary, IT Advisor to Chief Minister, Government of Andhra Pradesh.
Other Articles in this Open Access Journal on Digital Health include:
Live 12:00 – 1:00 P.M Mediterranean Diet and Lifestyle: A Symposium on Diet and Human Health : October 19, 2018
Reporter: Stephen J. Williams, Ph.D.
12.00 The Italian Mediterranean Diet as a Model of Identity of a People with a Universal Good to Safeguard Health?
Prof. Antonino De Lorenzo, MD, PhD.
Director of the School of Specialization in Clinical Nutrition, University of Rome “Tor Vergata”
It is important to determine how our bodies interacts with the environment, such as absorption of nutrients.
Studies shown here show decrease in life expectancy of a high sugar diet, but the quality of the diet, not just the type of diet is important, especially the role of natural probiotics and phenolic compounds found in the Mediterranean diet.
The WHO report in 2005 discusses the unsustainability of nutrition deficiencies and suggest a proactive personalized and preventative/predictive approach of diet and health.
Most of the noncommunicable diseases like CV (46%) cancer 21% and 11% respiratory and 4% diabetes could be prevented and or cured with proper dietary approaches
Italy vs. the US diseases: in Italy most disease due to environmental contamination while US diet plays a major role
The issue we are facing in less than 10% of the Italian population (fruit, fibers, oils) are not getting the proper foods, diet and contributing to as we suggest 46% of the disease
The Food Paradox: 1.5 billion are obese; we notice we are eating less products of quality and most quality produce is going to waste;
growing BMI and junk food: our studies are correlating the junk food (pre-prepared) and global BMI
modern diet and impact of human health (junk food high in additives, salt) has impact on microflora
Western Diet and Addiction: We show a link (using brain scans) showing correlation of junk food, sugar cravings, and other addictive behaviors by affecting the dopamine signaling in the substantia nigra
developed a junk food calculator and a Mediterranean diet calculator
the intersection of culture, food is embedded in the Mediterranean diet; this is supported by dietary studies of two distinct rural Italian populations (one of these in the US) show decrease in diet
Impact of diet: have model in Germany how this diet can increase health and life expectancy
from 1950 to present day 2.7 unit increase in the diet index can increase life expectancy by 26%
so there is an inverse relationship with our index and breast cancer
Environment and metal contamination and glyphosate: contribution to disease and impact of maintaining the healthy diet
huge problem with use of pesticides and increase in celiac disease
Cancer as a disease of the environment. Weinberg’s hallmarks of Cancer reveal how environment and epigenetics can impact any of these hallmarks.
Epigenetic effects
gene gatekeepers (Rb and P53)
DNA repair and damage stabilization
Heavy Metals and Dioxins:( alterations of the immune system as well as epigenetic regulations)
Asbestos and Mesothelioma: they have demonstrated that p53 can be involved in development of mesothelioma as reactivating p53 may be a suitable strategy for therapy
Diet, Tomato and Cancer
looked at tomato extract on p53 function in gastric cancer: tomato extract had a growth reduction effect and altered cell cycle regulation and results in apoptosis
RBL2 levels are increased in extract amount dependent manner so data shows effect of certain tomato extracts of the southern italian tomato ( )
Antonio Giordano: we tested whole extracts of almost 30 different varieties of tomato. The tomato variety with highest activity was near Ravela however black tomatoes have shown high antitumor activity. We have done a followup studies showing that these varieties, if grow elsewhere lose their antitumor activity after two or three generations of breeding, even though there genetics are similar. We are also studying the effects of different styles of cooking of these tomatoes and if it reduces antitumor effect
Live 11:00 AM- 12:00 Mediterranean Diet and Lifestyle: A Symposium on Diet and Human Health : Opening Remarks October 19, 2018
Reporter: Stephen J. Williams, Ph.D.
11:00Welcome
Prof. Antonio Giordano, MD, PhD.
Director and President of the Sbarro Health Research Organization, College of Science and Technology, Temple University
Welcome to this symposium on Italian lifestyle and health. This is similar to a symposium we had organized in New York. A year ago Bloomberg came out with a study on higher longevity of the italian population and this study was concluded that this increased longevity was due to the italian lifestyle and diet especially in the southern part of Italy, a region which is older than Rome (actually founded by Greeks and Estonians). However this symposium will delve into the components of this healthy Italian lifestyle which contributes to this longevity effect. Some of this work was done in collaboration with Temple University and sponsored by the Italian Consulate General in Philadelphia ( which sponsors programs in this area called Ciao Philadelphia).
Greetings: Fucsia Nissoli Fitzgerald, Deputy elected in the Foreign Circumscription – North and Central America Division
Speaking for the Consulate General is Francesca Cardurani-Meloni. I would like to talk briefly about the Italian cuisine and its evolution, from the influence of the North and South Italy, economic factors, and influence by other cultures. Italian cooking is about simplicity, cooking with what is in season and freshest. The meal is not about the food but about comfort around the table, and comparible to a cullinary heaven, about sharing with family and friends, and bringing the freshest ingredients to the table.
Consul General, Honorable Pier Attinio Forlano, General Consul of Italy in Philadelphia
11:30The Impact of Environment and Life Style in Human Disease
Prof. Antonio Giordano MD, PhD.
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Live Conference Coverage @Medcity Converge 2018 Philadelphia: Oncology Value Based Care and Patient Management
Reporter: Stephen J. Williams, Ph.D.
3:15 – 4:00 PM Breakout: What’s A Good Model for Value-Based Care in Oncology?
How do you implement a value-based care model in oncology? Medicare has created a bundled payment model in oncology and there are lessons to be learned from that and other programs. Listen to two presentations from experts in the field.
Mari: Building strategic partnerships with partners focused on population based health and evidence based outcomes. they provide data analytics and consultative services. Incorporate risk based systems. also looking at ancillary segments because they see cost savings. True Performance is their flagship performance program and 11% lower ED (saving $18 million) rates and 16% lower readmissions ($200 million cost savings). Also launched the Highmark Cancer care Program with Johns Hopkins. They monitor the adherence pathways and if clinician shows good adherence they give reimbursements.
Charles: Integra is a cloud based care platform focused on oncology and urology and allow clinicians to practice value based care. Providers must now focus on total cost including ER visits, end of life and therapies (which is half of total cost in US). The actionable ways to reduce costs is by reducing ER visits. What is working? Data on reimbursements models is very accurate so practices can dig into data and find effieciencies. However most practices do not have the analytics to do this.
care navigation
care path based treatment choices
enhanced patient access and experience
What is not working
data not structured so someone has to do manual curation of records
flawed logic based on plurality of visits but physician doesn’t know who else they saw
target pricing not taking into account high prices of new therapies
lack of timely reporting either by patient or physician
insufficient reimbursements
technology limitations
4:10- 4:55 Breakout: What Patients Want and Need On Their Journey
Cancer patients are living with an existential threat every day. A panel of patients and experts in oncology care management will discuss what’s needed to make the journey for oncology patients a bit more bearable.
sponsored by CEO Council for Growth
Moderator:Amanda Woodworth, M.D., Director of Breast Health, Drexel University College of Medicine Speakers: Kezia Fitzgerald, Chief Innovation Officer & Co-Founder, CareAline® Products, LLC Sara Hayes, Senior Director of Community Development, Health Union @SaraHayes_HU Katrece Nolen, Cancer Survivor and Founder, Find Cancer Help @KatreceNolen John Simpkins, Administrative DirectorService Line Director of the Cancer Center, Children’s Hospital of Philadelphia @ChildrensPhila
Kezia: was a cancer patient as well as her child getting treated at two different places and tough part was coordinating everything including treatments and schedules, working schedules
Katrece: had problem scheduling with oncologists because misdiagnosis and her imaging records were on CD and surgeon could not use the CD
John: the above are a common frustration among patients at a time when they don’t need the confusion. He feels cancer centers need to coordinate these services better
Sara: trying to assist people with this type of coordination is very tough even with all the resources
Kazia: she needed to do all the research on her own because big dichotomy being an adult and a pediatric patient where pediatrics get more information and patient centered care. She felt she felt burdening the physicians if she asked the same questions. How can we get more interaction with primary care physicians and feel comfortable with their interaction?
John: there is this dichotomy especially on wait times for adults is usually longer. We can also improve patient experience with counseling patients
Katrece: Just working with a patient navigator is not enough. The patient needs to take charge of their disease.
Sara: Patient communities can help as sometimes patients learn from other patients.
Amanda: in breast cancer , navigators are common but must take care they are not only people patients see after a while
John: at CHOP they also have a financial navigator. On the adult side there are on call financial navigators. Recent change of the high deductible plans are a major problem. Although new families are starting to become comfortable with the financial navigator
Katrece: guiding your children through your experience is important. It was also important for her to advocate for herself as she had three different sites of cancer care to coordinate and multiple teams to coordinate with each other
Amanda: A common theme seems to be hard trying to find the resources you need. Why is that?
Kazia: Sometimes it is hard to talk about your disease because it can be emotionally draining comforting other people who you told about the disease and they are being empathetic. Sometimes they want to keep their ‘journey’ to themselves
John: A relative kept her disease secret because she didn’t want to burden others…. a common cancer patient concern
Sara: Moderation of a social group is necessary to keep it a safe space and prevent trollers (like in Facebook support groups).
Kazia: most group members will get together and force those trollers out of the group
Katrece: alot of anxiety after treatment ends, patient feels like being dropped on the floor like they don’t get support after treatment. If there were survivorship navigators might be helpful
Amanda: for breast cancer they do a Survivor Care Package but just a paper packet, patients do appreciate it but a human coordinator would be a great idea
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Please see related articles on Live Coverage of Previous Meetings on this Open Access Journal
10:00-10:45 AM The Davids vs. the Cancer Goliath Part 1
Startups from diagnostics, biopharma, medtech, digital health and emerging tech will have 8 minutes to articulate their visions on how they aim to tame the beast.
10,000 cancer patients a month helping patients navigate cancer care with Belong App
Belong Eco system includes all their practitioners and using a trigger based content delivery (posts, articles etc)
most important taking unstructured health data (images, social activity, patient compilance) and converting to structured data
Care+Wear
personally design picc line cover for oncology patients
partners include NBA Major league baseball, Oscar de la Renta,
designs easy access pic line gowns and shirts
OncoPower :Digital Health in a Blockchain Ecosystem
problems associated with patient adherence and developed a product to address this
OncoPower Blockchain: HIPAA compliant using the coin Oncopower security token to incentiavize patients and oncologists to consult with each other or oncologists with tumor boards; this is not an initial coin offering
PolyArum
spinout from UPENN; developing a nanoparticle based radiation therapy; glioblastoma muse model showed great response with gold based nanoparticle and radiation
they see enhanced tumor penetration, and retention of the gold nanoparticles
however most nanoparticles need to be a large size greater than 5 nm to see effect so they used a polymer based particle; see good uptake but excretion past a week so need to re-dose with Au nanoparticles
they are looking for capital and expect to start trials in 2020
Seeker Health
tying to improve the efficiency of clinical trial enrollment
using social networks to find the patients to enroll in clinical trials
steps they use 1) find patients on Facebook, Google, Twitter 2) engage patient screen 3) screening at clinical sites
Seeker Portal is a patient management system: patients referred to a clinical site now can be tracked
11:00- 11:45 AM Breakout: How to Scale Precision Medicine
The potential for precision medicine is real, but is limited by access to patient datasets. How are government entities, hospitals and startups bringing the promise of precision medicine to the masses of oncology patients
Ingo: data is not ordered, only half of patients are tracked in some database, reimbursement a challenge
Eugean: identifying mutations as patients getting more comprehensive genomic coverage, clinical trials are expanding more rapidly as seen in 2018 ASCO
Ingo: general principals related to health outcomes or policy or reimbursement.. human studies are paramount but payers may not allowing for general principals (i.e. an Alk mutation in lung cancer and crizotanib treatment may be covered but maybe not for glioblastoma or another cancer containing similar ALK mutation; payers still depend on clinical trial results)
Andrew: using gene panels and NGS but only want to look for actionable targets; they establish an expert panel which reviews these NGS sequence results to determine actionable mutations
Ankur: they have molecular tumor boards but still if want to prescribe off label and can’t find a clinical trial there is no reimbursement
Andrew: going beyond actionable mutations, although many are doing WES (whole exome sequencing) can we use machine learning to see if there are actionable data from a WES
Ingo: we forget in datasets is that patients have needs today and we need those payment systems and structures today
Eugean: problem is the start from cost (where the cost starts at and was it truly medically necessary)
Norden: there are not enough data sharing to make a decision; an enormous amount of effort to get businesses and technical limitations in data sharing; possibly there are policies needed to be put in place to assimilate datasets and promote collaborations
Ingo: need to take out the middle men between sequencing of patient tumor and treatment decision; middle men are taking out value out of the ‘supply chain’;
Andrew: PATIENTS DON’T OWN their DATA but MOST clinicians agree THEY SHOULD
Ankur: patients are willing to share data but the HIPAA compliance is a barrier
11:50- 12:30 AM Fireside Chat with Michael Pellini, M.D.
Building a Precision Medicine Business from the Ground Up: An Operating and Venture Perspective
Dr. Pellini has spent more than 20 years working on the operating side of four companies, each of which has pushed the boundaries of the standard of care. He will describe his most recent experience at Foundation Medicine, at the forefront of precision medicine, and how that experience can be leveraged on the venture side, where he now evaluates new healthcare technologies.
Roche just bought Foundation Medicine for $2.5 billion. They negotiated over 7 months but aside from critics they felt it was a great deal because it gives them, as a diagnostic venture, the international reach and biotech expertise. Foundation Medicine offered Roche expertise on the diagnostic space including ability to navigate payers and regulatory aspects of the diagnostic business. He feels it benefits all aspects of patient care and the work they do with other companies.
Moderatore: Roche is doing multiple deals to ‘own’ a disease state.
Dr. Pellini: Roche is closing a deal with Flatiron just like how Merck closed deals with genomics companies. He feels best to build the best company on a stand alone basis and provide for patients, then good things will happen. However the problem of achieving scale for Precision Medicine is reimbursement by payers. They still have to keep collecting data and evolving services to suit pharma. They didn’t know if there model would work but when he met with FDA in 2011 they worked with Precision Medicine, said collect the data and we will keep working with you,
However the payers aren’t contributing to the effort. They need to assist some of the young companies that can’t raise the billion dollars needed for all the evidence that payers require. Precision Medicine still have problems, even though they have collected tremendous amounts of data and raised significant money. From the private payer perspective there is no clear roadmap for success.
They recognized that the payers would be difficult but they had a plan but won’t invest in companies that don’t have a plan for getting reimbursement from payers.
Moderator: What is section 32?
Pellini: Their investment arm invests in the spectrum of precision healtcare companies including tech companies. They started with a digital path imaging system that went from looking through a scope and now looking at a monitor with software integrated with medical records. Section 32 has $130 million under management and may go to $400 Million but they want to stay small.
Pellini: we get 4-5 AI pitches a week.
Moderator: Are you interested in companion diagnostics?
Pellini: There may be 24 expected 2018 drug approvals and 35% of them have a companion diagnostic (CDX) with them. however going out ten years 70% may have a CDX associated with them. Payers need to work with companies to figure out how to pay with these CDXs.
Medcity Converge 2018 Philadelphia: Live Coverage @pharma_BI
Stephen J. Williams: Reporter
3.3.3 Medcity Converge 2018 Philadelphia: Live Coverage @pharma_BI, Volume 2 (Volume Two: Latest in Genomics Methodologies for Therapeutics: Gene Editing, NGS and BioInformatics, Simulations and the Genome Ontology), Part 2: CRISPR for Gene Editing and DNA Repair
MedCity CONVERGE is a two-day executive summit that gathers innovative thought leaders from across all healthcare sectors to provide actionable insight on where oncology innovation is heading.
On July 11-12, 2018 in Philadelphia, MedCity CONVERGE will gather technology disruptors, payers, providers, life science companies, venture capitalists and more to discuss how AI, Big Data and Precision Medicine are changing the game in cancer. See agenda.
The conference highlights innovation and best practices across the continuum—from research to technological innovation to transformations of treatment and care delivery, and most importantly, patient empowerment—from some of the country’s most innovative healthcare organizations managing the disease.
Meaningful networking opportunities abound, with executives driving the innovation from diverse entities: leading hospital systems, medical device firms, biotech, pharma, emerging technology startups and health IT, as well as the investment community.
Day 1: Wednesday, July 11, 2018
7:30 AM
2nd Floor – Paris Foyer
Registration + Breakfast
8:15 AM–8:30 AM
Paris Ballroom
Welcome Remarks: Arundhati Parmar, VP and Editor-in-Chief, MedCity News
8:30 AM–9:15 AM
Paris Ballroom
Practical Applications of AI in Cancer
We are far from machine learning dictating clinical decision making, but AI has important niche applications in oncology. Hear from a panel of innovative startups and established life science players about how machine learning and AI can transform different aspects in healthcare, be it in patient recruitment, data analysis, drug discovery or care delivery.
Opening Keynote: Dr. Joshua Brody, Medical Oncologist, Mount Sinai Health System
The Promise and Hype of Immunotherapy
Immunotherapy is revolutionizing oncology care across various types of cancers, but it is also necessary to sort the hype from the reality. In his keynote, Dr. Brody will delve into the history of this new therapy mode and how it has transformed the treatment of lymphoma and other diseases. He will address the hype surrounding it, why so many still don’t respond to the treatment regimen and chart the way forward—one that can lead to more elegant immunotherapy combination paths and better outcomes for patients.
Startups from diagnostics, biopharma, medtech, digital health and emerging tech will have 8 minutes to articulate their visions on how they aim to tame the beast.
Breakout: Biopharma Gets Its Feet Wet in Digital Health
In the last few years, biotech and pharma companies have been leveraging digital health tools in everything from oncology trials, medication adherence to patient engagement. What are the lessons learned?
Moderator:Anthony Green, Ph.D., Vice President, Technology Commercialization Group, Ben Franklin Technology Partners Speakers: Derek Bowen, VP of Business Development & Strategy, Blackfynn, Inc. Gyan Kapur, Vice President, Activate Venture Partners Tom Kottler, Co-Founder & CEO, HealthPrize Technologies @HealthPrize
11:00 AM–11:45 AM
Paris Ballroom
Breakout: How to Scale Precision Medicine
The potential for precision medicine is real, but is limited by access to patient datasets. How are government entities, hospitals and startups bringing the promise of precision medicine to the masses of oncology patients
Building a Precision Medicine Business from the Ground Up: An Operating and Venture Perspective
Dr. Pellini has spent more than 20 years working on the operating side of four companies, each of which has pushed the boundaries of the standard of care. He will describe his most recent experience at Foundation Medicine, at the forefront of precision medicine, and how that experience can be leveraged on the venture side, where he now evaluates new healthcare technologies.
The randomized, controlled clinical trial is the gold standard, but it may be time for a new model. How can patient networks and new technology be leveraged to boost clinical trial recruitment and manage clinical trials more efficiently?
CONVERGEnce on Steroids: Why Comcast and Independence Blue Cross?
This year has seen a great deal of convergence in health care. One of the most innovative collaborations announced was that of Cable and Media giant Comcast Corporation and health plan Independence Blue Cross. This fireside chat will explore what the joint venture is all about, the backstory of how this unlikely partnership came to be, and what it might mean for our industry.
sponsored by Independence Blue Cross
Moderator:Tom Olenzak, Managing Director Strategic Innovation Portfolio, Independence Blue Cross @IBX Speakers: Marc Siry, VP, Strategic Development, Comcast Michael Vennera, SVP, Chief Information Officer, Independence Blue Cross
3:00 PM–3:15 PM
Paris Foyer
Networking Break + Showcase
3:15 PM–4:00 PM
Montpellier – 3rd Floor
Breakout: Charting the Way Forward in Gene and Cell Therapy
There is a boom underway in cell and gene therapies that are being wielded to tackle cancer and other diseases at the cellular level. FDA has approved a few drugs in the space. These innovations raise important questions about patient access, patient safety, and personalized medicine. Hear from interesting startups and experts about the future of gene therapy.
Moderator:Alaric DeArment, Senior Reporter, MedCity News Speakers: Amy DuRoss, CEO, Vineti Andre Goy, M.D., Chairman and Director of John Theurer Cancer Center , Hackensack University Medical Center
3:15 PM–4:00 PM
Paris Ballroom
Breakout: What’s A Good Model for Value-Based Care in Oncology?
How do you implement a value-based care model in oncology? Medicare has created a bundled payment model in oncology and there are lessons to be learned from that and other programs. Listen to two presentations from experts in the field.
Breakout: What Patients Want and Need On Their Journey
Cancer patients are living with an existential threat every day. A panel of patients and experts in oncology care management will discuss what’s needed to make the journey for oncology patients a bit more bearable.
sponsored by CEO Council for Growth
Moderator:Amanda Woodworth, M.D., Director of Breast Health, Drexel University College of Medicine Speakers: Kezia Fitzgerald, Chief Innovation Officer & Co-Founder, CareAline® Products, LLC Sara Hayes, Senior Director of Community Development, Health Union @SaraHayes_HU Katrece Nolen, Cancer Survivor and Founder, Find Cancer Help @KatreceNolen John Simpkins, Administrative DirectorService Line Director of the Cancer Center, Children’s Hospital of Philadelphia
5:00 PM–5:45 PM
Paris Ballroom
Early Diagnosis Through Predictive Biomarkers, NonInvasive Testing
Diagnosing cancer early is often the difference between survival and death. Hear from experts regarding the new and emerging technologies that form the next generation of cancer diagnostics.
Opening Remarks: Arundhati Parmar, VP and Editor-in-Chief, MedCity News
8:40 AM–9:25 AM
Paris Ballroom
The Davids vs. the Cancer Goliath Part 2
Startups from diagnostics, biopharma, medtech, digital health and emerging tech will have 8 minutes to articulate their visions on how they aim to tame the beast.
Liquid Biopsy and Gene Testing vs. Reimbursement Hurdles
Genetic testing, whether broad-scale or single gene-testing, is being ordered by an increasing number of oncologists, but in many cases, patients are left to pay for these expensive tests themselves. How can this dynamic be shifted? What can be learned from the success stories?
Moderator:Shoshannah Roth, Assistant Director of Health Technology Assessment and Information Services , ECRI Institute @Ecri_Institute Speakers: Rob Dumanois, Manager – reimbursement strategy, Thermo Fisher Scientific Eugean Jiwanmall, Senior Research Analyst for Medical Policy & Technology Evaluation , Independence Blue Cross @IBX Michael Nall, President and Chief Executive Officer, Biocept
10:15 AM–10:25 AM
Paris Foyer
Networking Break + Showcase
10:25 AM–11:10 AM
Paris Ballroom
Promising Drugs, Pricing and Access
The drug pricing debate rages on. What are the solutions to continuing to foster research and innovation, while ensuring access and affordability for patients? Can biosimilars and generics be able to expand market access in the U.S.?
Moderator:Bunny Ellerin, Director, Healthcare and Pharmaceutical Management Program, Columbia Business School Speakers: Patrick Davish, AVP, Global & US Pricing/Market Access, Merck Robert Dubois M.D., Chief Science Officer and Executive Vice President, National Pharmaceutical Council Gary Kurzman, M.D., Senior Vice President and Managing Director, Healthcare, Safeguard Scientifics Steven Lucio, Associate Vice President, Pharmacy Services, Vizient
11:10 AM–11:20 AM
Networking Break + Showcase
11:20 AM–12:05 PM
Paris Ballroom
Breaking Down Silos in Research
“Silo” is healthcare’s four-letter word. How are researchers, life science companies and others sharing information that can benefit patients more quickly? Hear from experts at institutions that are striving to tear down the walls that prevent data from flowing.
Moderator:Vini Jolly, Executive Director, Woodside Capital Partners Speakers: Ardy Arianpour, CEO & Co-Founder, Seqster @seqster Lauren Becnel, Ph.D., Real World Data Lead for Oncology, Pfizer Rakesh Mathew, Innovation, Research, & Development Lead, HealthShareExchange David Nace M.D., Chief Medical Officer, Innovaccer
12:10 PM–12:40 PM
Paris Ballroom
Closing Keynote: Anne Stockwell, Cancer Survivor, Founder, Well Again
Finding Your Well Again
Anne Stockwell discusses her mission to help cancer survivors heal their emotional trauma and regain their balance after treatment. A multi-skilled artist as well as a three-time cancer survivor, Anne learned through experience that the emotional impact of cancer often strikes after treatment, isolating a survivor rather than lighting the way forward. Anne realized that her well-trained imagination as an artist was key to her successful reentry after cancer. Now she helps other survivors develop their own creative tools to help them find their way forward with joy.
Swiss Paraplegic Centre, Nottwil, Switzerland – A World-Class Clinic for Spinal Cord Injuries
Author: Gail S. Thornton, M.A.
Co-Editor: The VOICES of Patients, Hospital CEOs, HealthCare Providers, Caregivers and Families: Personal Experience with Critical Care and Invasive Medical Procedures
Article ID #232: Swiss Paraplegic Centre, Nottwil, Switzerland – A World-Class Clinic for Spinal Cord Injuries. Published on 3/23/17
WordCloud Image Produced by Adam Tubman
The Swiss Paraplegic Centre (SPC, www.paraplegie.ch) in Nottwil, Switzerland, is a privately owned, leading acute care and specialist hospital employing more than 1,500 health professionals in 80 different occupations that focuses on world-class primary care and comprehensive rehabilitation of patients with spinal cord injuries. In addition to the SPC’s extensive range of medical and therapeutic care, treatment and services, the hospital offers advisory services, as well as research in the areas of paraplegia [paralysis of the legs and lower body, typically caused by spinal injury or disease], tetraplegia [also known as quadriplegia, paralysis caused by illness or injury that results in the partial or total loss of use of all four limbs and torso], prevention and related conditions. With 150 beds, the SPC provides modern facilities for rehabilitation and therapy, diagnostics, surgery, ongoing care, orthopedic technology, as well as social services and 24-hour emergency care.
In its 26-year history, the SPC has provided treatment and care to more than 20,000 in-patients. That number continues to grow exponentially due to the reputation of the SPC. In fact, the SPC’s staff performs their duties with effectiveness, expediency and cost-efficiency measures, requiring highly developed process-led medicine, centered around the needs of the patient.
The areas of medical specialty and centers of excellence include the Swiss Paraplegic Centre (SPC), the Swiss Spinal Column and Spinal Cord Centre (SWRZ), the Centre for Pain Medicine (ZSM) and the Swiss Olympic Medical Center (SOMC). These centers respectively offer patients cutting-edge medical treatment based on the most advanced research in areas covering treatment and rehabilitation cases of acute paraplegia, vertebral and spinal cord surgery, as well as services relating to pain management, sports medicine and preventive health checks.
Alongside the core focus on paraplegiology, the SPC is also equipped with the necessary medical facilities, allowing for the lifelong care of paraplegic patients. The SPC provides individually-tailored, comprehensive treatment in three phases (acute, reactivation and integration) using highly skilled staff and state-of-the-art equipment. The aim is always to re-establish a patient’s personal functionality, self-image and lifestyle to the fullest possible extent, with a holistic approach to treatment that includes mental, physical and psycho-social aspects, such as career, family and leisure activities.
Specialist services available at the SPC include amongst others orthopedics, neuro-urology, pain medicine, sports medicine, prevention, clinical research, emergency medicine, vehicle conversion and rehabilitation techniques. Medico-therapeutic treatments, such as physiotherapy, ergotherapy and training therapy are available, alongside advice and counseling services, such as professional reintegration.
The SPC is the largest of Switzerland’s four special hospitals for paraplegics and tetraplegics located in Nottwil/Lucerne, a town in central Switzerland on the shores of Lake Sempach. The other three facilities are in Basel, Sion and Zurich. Nowadays, the SPC consistently treats more than 60 percent of people with spinal cord injury in Switzerland and is fully occupied year-round.
Image SOURCE: Photographs courtesy of Swiss Paraplegic Centre, Nottwil, Switzerland. Interior and exterior photographs of the hospital.
Below is my interview with Hospital Director Dr. Med. Hans Peter Gmünder, M.D., which occurred in March, 2017.
As a privately owned clinic with a specialty in the rehabilitation of patients with spinal cord injuries, how do you keep the spirit of research and innovation alive?
Dr. Med. (medicinae) Gmünder: The goal of the Swiss Paraplegic Foundation, an umbrella organization that encompasses the Swiss Paraplegic Centre, is to create a unique network of services for people with spinal cord injury, from primary care through to the end of their lives. Its aim is to provide comprehensive rehabilitation and to reintegrate those affected into family life, society and the working environment.
We want to maintain our pioneering and leading role in the fields of acute medicine, rehabilitation and lifelong assistance to people with spinal cord injuries. By providing a comprehensive network of services featuring solidarity, medical care, integration and lifelong assistance, as well as research all in one place, we are unique in Switzerland and in other countries around the world.
People with spinal cord injury rely upon our network of services, which are at their disposal throughout their lives. The challenge facing us is to continually adapt these services to reflect current research and treatment to comply with our mission of delivering high-quality services. The trust which has been placed in us obliges us to continue our success story.
We have our own research department, closely linked to the Swiss Paraplegic Centre, and dedicated employees who draw upon their wide-ranging professional networks to stay on top of the latest international research.
We have a few examples that we’d like to share with you.
In 2013, the World Health Organization (WHO) published its first international health report on the topic of spinal cord injury, “International Perspectives on Spinal Cord Injury.” It was developed in collaboration with Swiss Paraplegic Research in Nottwil and a team of international experts.
In the summer of 2014, the Swiss Paraplegic Centre became the first rehabilitation center in Switzerland to implement exoskeletons [external covering for the body that provides both support and protection] in the rehabilitation and training of patients with spinal cord injury. Our experiences are included in an international study, and will contribute to the development of useful mobility aids for people with spinal cord injuries.
At the end of October 2016, an estimated 9,000 visitors came to Nottwil for two days of celebrations to mark five anniversaries — the Swiss Paraplegic Foundation turned 40, the Swiss Paraplegics Association was 35, the Swiss Paraplegic Centre celebrated 25 years, Swiss Paraplegic Research reached 15 years, and it was the 80th birthday of the founder and honorary president, Dr. Med. Guido A. Zäch, M.D.
What draws patients to the Swiss Paraplegic Centre?
Dr. Gmünder: We support people with spinal cord injuries throughout their lives. It is the unique, holistic approach to acute medicine, rehabilitation and lifelong medical, professional and social assistance that draws patients from Switzerland and many other countries to our clinic in Nottwil.
For example, in cases where we have individuals involved in serious accidents, the comprehensive rehabilitation of a patient with spinal cord injury begins at the scene of the accident. The aim of comprehensive assistance follows in three stages – acute, reactivation and integration phase – through the appropriate, individual deployment of specialist personnel and instruments. We rescue the individual at the scene of the accident and provide the right acute therapy. What follows is an initial rehabilitation through specialists in diagnosis, surgery, therapy and care, and then comes lifelong support and care with the aid of specialists.
Following the disproportionately high percentage of people with tetraplegia admitted to the Centre for initial rehabilitation in 2014, our specialist clinic reported a higher proportion of people with paraplegia in 2015. Spinal cord injuries resulted from an accident in around half of all initial rehabilitation cases: falls led to the spinal cord injury in the case of 43 percent of people affected, sports accidents with 35 percent and road traffic accidents in 18 percent. In fact, 52,482 nursing days were clocked for a total of 1,085 in-patients who were discharged from the clinic after initial rehabilitation or follow-up treatment in 2015.
In fact, some of our patient success stories mentioned on our web site involve these individuals:
“I was a cheesemaker for 33 years with my own dairy; gardening was my second love. That was before I had my accident helping out on my son’s farm. I need a new hobby now that I will enjoy, that will fill my time and give me something to do when I get back home. Making art out of lime wood could appeal to me. While it is difficult for me to make the small cuts in the wood as I lack strength in my hand, patience will reap rewards. My most important objective? To be able to stand on my own feet and take a few steps again. I should have achieved that by the time I am discharged from the clinic in five months.” — Josef Kobler (58), tetraplegic following an accident.
“Since being diagnosed with a spinal cord injury, I come back to Nottwil a lot. For instance, to go the Wheelchair Mechanics Department to have the settings of my new wheelchair optimized. It replaces my legs and must fit my body perfectly. However, in most cases I attend the Centre for Pain Medicine of the SPC as an outpatient in order to have the extremely severe pains and muscle cramps, which I suffer from every day, alleviated. They became so severe that I had a pain pump with medication implanted at the SPC. It is apparent now that unfortunately the effect isn’t permanent. We are now giving electrostimulation a try. This involves applying electrodes to the vertebral canal. If I could finally get my pain under control, I would be able to return to work and set up my own business. That is my biggest wish. I have had an idea about what I could do.” — Hervé Brohon (41), paraplegic following an accident.
“I have always been passionate about cooking and have enjoyed treating my family and guests to my dishes and to the aperitifs that I have created myself. I absolutely want to be able to do that again. As independently as possible, of course. That is my objective. I have availed of the opportunity on a few occasions to try out the obstacle-free practice apartment and kitchen at the SPC. If I am able to go home in four weeks, my kitchen will also be adapted to be wheelchair-friendly. Whether I am cooking for two, four or six people is a much bigger consideration as a wheelchair user. I now have to consciously allow for time and effort. However, one thing is certain: I can’t wait to welcome my first guests.” — Isa Bapst (73), paraplegic following an accident.
How is the Swiss Paraplegic Centre transforming health care?
Dr. Gmünder: The Swiss Paraplegic Centre offers an integrated healthcare structure, including a wide range of medical specialists covering every aspect of medical care for those with spinal cord injuries.
In selected core disciplines for the care of people with spinal cord injuries, we also treat a large number of patients without spinal cord injuries. This relates primarily to pain medicine, spine- and spinal cord surgery and respiratory medicine.
In fact, the Swiss Paraplegic Foundation, our umbrella organization, has been an unbelievable success story, operating a network of services to benefit people with spinal cord injury.
Our Chairman of the Board of Trustees, Dr. Sc. Techn. (scientiae technicarum) Daniel Joggi, knows what it’s like to become totally dependent as he has been in a wheelchair for the past four decades.
Dr. Joggi tells his story: “I have been a wheelchair user ever since I had a skiing accident 39 years ago. I know what it is like to become totally dependent from one second to the next. How doggedly you have to battle to recover as much of your mobility as possible and, more especially, to be able to live a self-determined life again after a long process of resilience. The inner resolve it takes to plot a new course in life, to have relationships with others from a different perspective and to acquire new job skills. Therefore, I am eternally grateful along with all the other people in Switzerland with paraplegia and tetraplegia for the help, support and great solidarity that allow the Foundation to deliver all the services which are so immensely valuable to us.”
At the Swiss Paraplegic Centre, a 24-hour emergency department is staffed to handle any emergency. Please provide your thoughts on this critical component of diagnosis and care for newly diagnosed patients.
Dr. Gmünder: Yes, our Centre is recognized by the Swiss Union of Surgical Societies as a specialist clinic for first-aid treatment of paraplegics.
Statistics and experience clearly show that in 80 out of 100 cases, the damage to the spine and the spinal cord is not definite immediately after an accident. In the first six hours, there are real chances to mitigate or even avoid an imminent cross-paralysis. After that it is usually too late.
In addition to transferring an individual directly to the SPC, appropriate acute care is another important criterion for the success of the individual affected by spinal cord issues. That means that individuals are in the right place for the subsequent, comprehensive rehabilitation.
The benefits for our patients are:
Emergency service around the clock by specialists trained to minimize damage to the spinal cord and spine;
Admission and treatment of all patients with paraplegia from all over Switzerland;
Specific knowledge and practical experience in comprehensive rehabilitation of paraplegics;
Comprehensive range of medical and therapeutic services under one roof;
Modern equipment for precise, careful diagnostics and operations;
Consultancy and network for external experts in areas not covered by the SPC;
Interdisciplinary work in well-established teams; and
Central location proximity and quick access from all parts of the country.
What is your connection to the Swiss Paraplegic Research and its mission of getting “strategy into research” and “research into practice?”
Dr. Gmünder: The Swiss Paraplegic Research (SPR), connected to the Swiss Paraplegic Centre, is part of the Swiss Paraplegic Foundation (SPF) and is an integral part of the Nottwil campus.
It is the mission of Swiss Paraplegic Research to sustainably improve the situation of people with paraplegia or tetraplegia through clinical and interdisciplinary research in the long-term. The areas that are aimed to be improved are functioning, social integration, equality of opportunity, health, self-determination and quality of life.
Our Swiss Paraplegic Research has been supported by the Federal Government of Switzerland and by the Canton of Lucerne for eight years as a non-university research institution. We are proud of this accomplishment.
Our main research domains are in the areas of aging, neuro-rehabilitation, musculo-skeletal health, preserving and improving function of upper limbs, pain, pressure sores, respiration, urology and orthopedics.
The goal of Swiss Paraplegic Research is to promote the study of health from a holistic point of view, by focusing on the ‘lived experience’ of persons with health conditions and their interaction with society. We are, therefore, establishing a research network for rehabilitation research from a comprehensive perspective on a national and international level. This network will make it possible to practically apply the latest research findings to provide the best possible care and reintegration for people with paraplegia or tetraplegia.
This year, we received the approval of 18 new research projects and we had a total of 36 studies in progress under review, undertaken by and with the involvement of the Clinical Trial Unit (CTU), the department for clinical research at the Centre. For example, the successful implementation of a multi-center study on the use of walking robots (exoskeleton) merits special mention. Research was carried out in that study into the wide range of effects of maintaining movement for people with spinal cord injury.
The CTU will continue to carry out research in Rehabilitation Engineering in a cooperation with Burgdorf University of Applied Science and the research group headed by Professor Kenneth Hunt. The “Life and Care” symposium on breathing and respiration organized by the CTU provided a platform for an international knowledge exchange with national and international experts. This is crucial for further scientific development in respiratory medicine. In 2015, the CTU also launched the CTU Central Switzerland, in association with Lucerne Cantonal Hospital and the University of Lucerne. It supports clinics which are actively engaged in research with specific services, thereby enhancing Switzerland’s standing as a center of research.
How does the Swiss Paraplegic Foundation support your vision?
Dr. Gmünder: The Swiss Paraplegic Group includes the Swiss Paraplegic Foundation, which was established in 1975, two partner organizations — the Benefactors’ Association and the Swiss Paraplegics Association, and six companies owned by the Foundation. Those six companies are the Swiss Paraplegic Centre, the Swiss Paraplegic Research, Orthotec AG, ParaHelp AG, Sirmed Swiss Institute of Emergency Medicine AG, Seminarhotel Sempachersee AG.
The Swiss Paraplegic Foundation, founded by Dr. Med. Guido A. Zäch in 1975, is a solidarity network for people with spinal cord injuries, unrivaled anywhere in the world. Its work is based on the vision of medical care and comprehensive rehabilitation for people with paraplegia and tetraplegia, with a view towards enabling them to lead their lives with self-determination and with as much independence as possible, supported by the latest advances in science and technology.
The unique network of services of the Foundation is a strategic mix of Solidarity, Research, Medicine and Integration and Lifelong Assistance. Let me elaborate on these services.
Solidarity
The Foundation provides a comprehensive range of services for every area of a person’s life who has a spinal cord injury. The Nottwil campus serves to be a center of excellence for integration, assistance and lifelong learning for our patients.
The Foundation ensures that its benefactors and donors are aware of our list of services and can support us longer term.
The Foundation establishes a national and international network that will guarantee better basic conditions for people with spinal cord injury.
The Foundation encourages training of specialized personnel in the field of spinal cord injury.
Research
The Foundation contributes to the sustainable improvement of health, social integration, equal opportunities and self-determination of people with spinal cord injury by carrying out rehabilitation research.
The Foundation works closely with the World Health Organization (WHO) and encourages exchanges with universities and institutions locally and globally for the latest scientific findings and conducts academic training at the University of Lucerne.
The Foundation develops high-quality care standards for its patients.
Medicine
The Foundation offers all medical services needed for professional acute care and rehabilitation of people with spinal cord injury and encourages patients to become involved in their therapy and to take responsibility for their lives.
The Foundation strengthens relationships with partners in specific disciplines and local institutions to benefit people with spinal cord injury.
The Foundation is a member of committees with political influence to ensure that its patients receive highly specialized medical care.
Integration and Lifelong Assistance
The Foundation establishes a network throughout Switzerland to help people with spinal cord injury.
The Foundation offers comprehensive services to meet people’s needs to improve their integration into society.
The Foundation encourages people with spinal cord injury to lead an independent life and educate family and friends so they can provide the necessary support.
Moreover, in cases of hardship, the Foundation makes contributions towards the cost of walking aids, equipment and amenities for people with paraplegia and tetraplegia. It also takes on uncovered hospital and care costs.
Current market research shows that the Swiss Paraplegic Foundation ranks among the three most highly rated aid organizations in Switzerland. Can you please elaborate on why?
Dr. Gmünder: That is true. The Foundation is highly rated in terms of goodwill, innovation, competence and effectiveness. In addition, it is regarded as undoubtedly the most competent organization representing people with disabilities in Switzerland, according to several market research surveys.
So that we can continue to meet the demand for our patients, families and other visitors, plans are under way to upgrade our clinic and hotel on our premises.
We generally have interest from visitors to visit our Centre. Our guided tours and events enabled the general public to see how the foundation concept is put into practice, day in, day out. In Nottwil, 160 guides provided more than 11,000 visitors with a glimpse into the operations at our specialist clinic.
Additionally, we organized more than 5,000 scientific meetings attended by more than 170,000 people in 2015. And our wheelchair athletes take part in two major competitions, the IPC Athletics Grand Prix and the UCI Para-cycling World Championships, at our Nottwil site. It is our hope to continue to motivate individuals with spinal cord injuries to be involved in healthy exercise.
Since you became Hospital Director, how have you changed the way that you deliver health care or interact with patients?
Dr. Gmünder: It is important to me that the patients and their needs are the focus of our efforts. As such, one of my main tasks is to align our processes with our patients.
Here are some examples:
We started construction with a newly expanded Intensive Care Medicine, Pain Medicine and Surgical Medicine department last year to provide patients with an expanded variety of cross-linked treatments.
Certified as a nationwide trauma center, our Swiss Spinal Column and Spinal Cord Centre has become increasingly recognized throughout the country with large numbers of non-paralyzed patients, who have severe spinal cord injury, being referred to our facility. It is under the medical leadership of the Head of Department Dr. Med. Martin Baur, M.D. This highly specialized acute care facility recently received certification as a specialist center for traumatology within the Central Swiss Trauma Network.
We believe in developing the next generation of professionals and our Department of Anesthesia was recognized as a center of further training; the first two junior doctors have been appointed and postgraduate courses in anesthesia nursing are already available.
Our Swiss Weaning Centre, where individuals learn to breathe without a machine, has brought specialists from Intensive Care Medicine, Speech Therapy, RespiCare and Spinal Cord Medicine even closer together in a new process structure for respiratory medicine. At the same time, the Swiss Weaning Centre reported increased referrals from university hospitals and private clinics, as well as numerous successes with patients who had proved to be difficult to wean from respiratory equipment.
Our Centre for Pain Medicine, one of the largest pain facilities in the country, reported a further increase in inpatient treatments. Epiduroscopy, which was introduced in 2014, has proved to be a success. It is a percutaneous, minimally invasive procedure which is used in the diagnosis and treatment of pain syndromes near the spinal cord.
We reached a milestone in tetra hand surgery. The team of our doctors has been consulting at two other spinal cord injury centers and have used these occasions to show doctors around the country what possibilities there are for improved hand and grip functions, leading to an enhanced quality of life.
In what ways do you rehabilitate the whole patient? Why is this important early on in treatment?
Dr. Gmünder: In accordance with our vision, we are not just focusing on physical rehabilitation but on the entire person in their social environment (leisure, work, housing, mobility). Due to our broad organizational structure, we have many resources at our disposal. The rate of reintegration for people who did their primary rehabilitation at the Swiss Paraplegic Centre is almost 65 percent – one of the highest in the world.
Because we work to address diagnosis, treatment and management of traumatic spinal cord injuries with our patients, we take great care in working with patients on their medical disabilities, physical disabilities, psychological disabilities, vocational disabilities, social aspects and any health complications. That means that we not only treat patient’s medically, but also we treat them through therapy and complementary medicine, such as art therapy, sports and water therapy and homeopathic medicine.
At the SPC, we nurture a culture which is characterized by common values and shared objectives, namely commitment, leadership, a humane approach, cooperation and openness and fairness in our dealing with one another and with our patients.
As you follow patients throughout their rehabilitation and treatment, what are you most proud of at the Centre?
Dr. Gmünder: Research has shown that early referral of a patient with a traumatic spinal injury lessens the complications, shortens the length of time in the hospital and is, therefore, more cost-effective.
We are confronted by individuals every day whose abilities have been limited by disease, trauma, congenital disorders or pain – and we are focused on enabling them to achieve their maximum functional abilities. Our patients have a better outcome and quality of life, patient-focused treatment, ongoing case management, and lifelong care.
It’s important to emphasize that our comprehensive rehabilitation of individuals with spinal cord injuries begins on the first day after the accident or trauma. On one hand, the medical treatments with paraplegia or tetraplegia are performed by a multidisciplinary medical team. And on the other hand, it is our goal to give those individuals their personality and life structure as quickly – and as best – as possible. An individual’s medical condition affects their psychological, physical and social aspects of life.
We focus on individualized treatment for the greatest possible independence for our patients. When patients are satisfied with our work and its results, they can resume a self-determined life. That is our greatest joy.
Image SOURCE: Photograph of Hospital Director Hans Peter Gmünder, M.D., courtesy of Swiss Paraplegic Centre, Nottwil, Switzerland.
Hans Peter Gmünder, M.D. Hospital Director
Hans Peter Gmünder, M.D., assumed the role of Hospital Director of the Swiss Paraplegic Centre in 2011. He is a German-Belgian double citizen.
Previously, Dr. Gmünder was Chief Physician and Medical Director of the Rehaklinik Bellikon, a rehabilitation and specialist clinic for traumatic acute rehabilitation, sports medicine, professional integration and medical expertise for 10 years in the canton of Aargau, Switzerland. He began his career at the Swiss Paraplegic Centre in the 1990s as Assistant and Senior Physician, and later as Chief Physician and Deputy Chief Physician.
He completed a B.S. degree in Business Administration at SRH FernHochschule Riedlingen in 2010 and an M.D. degree at Freie Universität Berlin in 1987.
He is married to Sabeth and is the father of two children.
Editor’s note:
We would like to thank Claudia Merkel, head of public relations, Swiss Paraplegic Centre, for the help and support she provided during this interview.
Choosing the right rehabilitation facility is one of the most important decisions a survivor of a brain or spinal cord injury will make as the type and quality of care will have a significant impact on the patient’s long-term outcome. The top 10 rehabilitation centers in the United States are (http://www.brainandspinalcord.org/2016/04/15/top-ten-rehabilitation-hospitals-usa/):
Rehabilitation Institute of Chicago
TIRR Memorial Hermann
Kessler Institute for Rehabilitation
University of Washington Medical Center
Spaulding Rehabilitation Hospital, Massachusetts General Hospital
Mayo Clinic
Craig Hospital
Shepard Center
Rusk Rehabilitation at NYU Langone Medical Center
Moss Rehab
The Rehabilitation Institute of Chicago (https://www.sralab.org/new-ric), located in Chicago, Illinois, has been ranked as the number one rehabilitation hospital in the United States for the past 24 years by U.S. News and World Report. It is a 182-bed research facility that focuses solely on rehabilitation in many areas, including spinal cord, brain, nerve, muscle and bone, cancer and pediatric. For example, the rehabilitation course for patients with spinal cord injury requires precise medical and nursing expertise, respiratory and pulmonary care and sophisticated diagnostic and therapeutic equipment. For several years, the hospital has dedicated investments in talent, space and equipment that attract a high volume of patients with challenging conditions. The high volume, diversity of condition and greater complexity enables them to expand their experience in helping patients recover from spinal cord injury. Primary goals for patients include the emergence of meaningful motor function, sensation, coordination and endurance, resolution of respiratory and vascular instability, and overall continued medical recovery from the injury or disease.
The Spaulding Rehabilitation Hospital Boston (http://spauldingrehab.org/about/facts-statistics) is ranked number five in the country by U.S. News and World Report and number one in New England. As a unique center of treatment excellence and a leading physical medicine and rehabilitation research institution, Spaulding Boston is comprised of major departments in all areas of medicine requiring rehabilitation. They are a nationally recognized leader in innovation, research and education. The facility also has been the source of significant treatment innovations with dramatic implications for a range of conditions, including amputation and limb deficiencies, brain injury, cardiac rehabilitation, pulmonary rehabilitation and spinal cord injuries, to name a few. http://spauldingrehab.org/conditions-and-treatments/list.
Whether individuals are adjusting to a life-altering illness or recovering from a back injury, they will find the care they need within the Spaulding Rehabilitation Network. Rehabilitation specialists have the training, experience, resources and dedication to help individuals:
Regain function after a devastating illness or injury,
Develop skills to be active and independent when living with chronic illness and/or disability,
Recover from surgery, work and sports injuries, and
The ACGME accredited Harvard Medical School/ Spaulding/ VA Boston Fellowship Program in Spinal Cord Injury (SCI) Medicine is a 12-month training program that offers advanced clinical training in SCI, a strong didactic component, and opportunities for research with protected elective time. The curriculum is designed to provide exposure to the full spectrum of SCI care and includes rotations at VA Boston, Spaulding Rehabilitation Hospital, and Brigham & Woman’s Hospital. Requirements include prior completion of an approved residency program in a specialty such as physical medicine and rehabilitation, neurology, internal medicine, family practice, surgery, or other specialties relevant to spinal cord injury. http://spauldingrehab.org/education-and-training/spinal-cord-fellowship.
Specifically, the Spaulding Rehabilitation Network is at the forefront of innovative treatment for major disabling conditions, including spinal cord injury (SCI), traumatic brain injury (TBI), other traumatic injuries, stroke, and neuromuscular disorders such as multiple sclerosis, cerebral palsy, and Parkinson’s disease. At Spaulding, the treatment goals go far beyond immediate rehabilitation to address long-term health and function, as well as giving patients encouragement and hope as they return to their lives in the community.
The hub of their spinal cord injury program is the Spaulding-Harvard Spinal Cord Injury Model Systems (SCIMS) Rehabilitation Program, led by experts at Spaulding Boston, a Center of Excellence in spinal cord injury rehabilitation. With the guidance of their physicians and other rehabilitation specialists and access to some of the most advanced technologies available today, their patients have the resources to strive for their highest level of neurorecovery – and to develop successful, enriching strategies for independent living.
When potentially life-altering spinal cord injury occurs, the Spaulding Rehabilitation Network clinicians are dedicated to pioneering improved therapies that can make all the difference to a patient’s immediate and long-term recovery. Their goal is to support a patient’s return to an active, productive and fulfilling life.
Whether the spinal cord injury is due to traumatic injury or illness, their team of experts will develop a treatment plan in collaboration with the patient and family. Depending on the severity of the injury, their teams work on improving function in: walking, balance and mobility; speech, swallowing and breathing; thinking (cognition), behavior and safety; dressing, bathing and other activities of daily living; incontinence, bowel and bladder function.
Their commitment is to offer a full spectrum of rehabilitation services for adults and children with spinal cord injury:
Intensive, hospital-level rehabilitation with goal-directed therapy 3 – 5 hours a day, at least 5 days a week for inpatients.
Long-term care and rehabilitation for patients with complicating conditions.
Ventilator program to wean patients off mechanical breathing support in preparation for transition to more intensive rehabilitation.
Cutting-edge spinal cord injury technologies and therapeutic techniques.
Emphasis on family participation throughout the course of care. with an inpatient comprehensive training and education series.
Seamless transition to multi-disciplinary outpatient rehabilitation.
Sports and Recreation Programs to promote fitness, develop skills, and facilitate involvement with community to “live beyond boundaries.”
Coordination of care with Spaulding’s outpatient centers.
Spaulding Rehabilitation Network is the official teaching partner of the Harvard Medical School Department of Physical Medicine and Rehabilitation (PM&R). The Spaulding network’s facilities are members of Partners HealthCare, founded by Massachusetts General Hospital and Brigham and Women’s Hospital. The knowledge and expertise of this entire healthcare system is available to patients and caregivers. Their continuum of superb healthcare ensures that patients will find the care they need throughout their journey and the strength they need to live their life to the fullest.
BioDetego, A cancer diagnostics development company (see meeting announcement here)
Monday, December 14, 2015, 6:30PM; at the Chesterbrook (Wayne, PA) Embassy Suites Hotel (directions below)
Sponsored by:
To register please click on www.rxpcci.com and follow directions
BioDetego is developing the next generation of cancer diagnostics – identifying people that will benefit from chemotherapy with unprecedented accuracy.
Today there are no clear treatment guidelines for many people with cancer and routinely people are undertreated (the lack of chemotherapy treatment for people at risk of disease relapse) or overtreated (the unnecessary, harmful treatment of people not at risk). The resulting human and economic burden is enormous. Those undertreated face increased mortality at a cost of >$150,000 per relapse, and those overtreated suffer the harmful effects of unnecessary chemotherapy at a cost of $25,000 per person.
Supported by compelling clinical data in multiple cancer types, BioDetego is developing VASPfore, a disruptive cancer diagnostic platform that addresses this critical gap in cancer care by accurately determining each person’s risk of relapse and need for chemotherapy. The lead product, VASPfore-CRC, is poised to change the standard of care in colorectal cancer diagnosis and treatment. The test will:
– Accurately determine individual risk of relapse and chemotherapy need
– Provide 100% actionable information to reduce harmful under- and overtreatment
– Improve health outcomes
– Deliver savings by reducing payor costs
BioDetego’s lead product VASPfore-CRC targets 150,000 patients per year diagnosed with stage II or III a/b colorectal cancer in the US, Europe and Australia excluding those unsuitable for chemotherapy due to age or health. Based on pricing of a competitor test with payor coverage the target market is valued at $1Billion. Ongoing development of the VASPfore platform in additional cancer types (e.g. breast, lung and prostate) will substantially increase market size. The total addressable market for the VASPfore platform is comprised of the 1.5 million patients per year diagnosed with an early/intermediate stage epithelial cancer in the US, Europe and Australia and is valued at $6.5 Billion.
PROGRAM
6:30: Cocktails and Dinner; there will be a cash bar and a special two-entrée buffet
8:00 David Zuzga PhD, CEO, will deliver the Company”s “Elevator” pitch to the group.
8:20: A panel consisting of Maria Maccecchini, Dennis Fujii and Caroline Hoedemaker will address three major issues crucial to helping the Company reach the next level. BioDetego has submitted the following questions:
BioDetego is a virtual company without full-time employees and is open-minded about the composition of itd eventual management team. Given the company’s planned next steps, what mix of experience and commitment (potentially draw from its founders, current advisory board members, or from outside the company) would be desirable to potential investors?
VASPfore has the potential to inform oncology clinical trials where enrolling cancer patients likely to relapse may increase the power of a study to determine treatment efficacy. How might BioDetego pursue and structure a co-development deal with a potential strategic partner?
Clinical development milestones, such as the completion of large clinical validation studies and expansion of the platform to additional cancers, represent significant value inflection points. How should these inflection points be integrated into an exit strategy which best manages investor risk and potential for return.
9:00: Q&A session
Remember to register: click on www.rxpcci.com and follow directions
Dinner price for members is a flat $40; Parking is free!
Lifetime dues for new members are still $100; join PCCI and your first dinner will be ON US!
Bring a friend and/or a business colleague! You know that our meetings a livelier and more interesting than ever.
The Embassy Suites Hotel provides an excellent facility, more room and a fine menu.
Every PCCI meeting is webcast. The webcast recording of the PCCI meetings will be posted on the PCCI website “rxpcci.com” and webcast live via the internet during the event.
Directions: Take Rt 202 to the Chesterbrook exit (that’s two exits South of the Devon exit), turn Right at the end of the Exit ramp and you’ll see the hotel at your Right. If you are going North on 202, get off at the Chesterbrook Exit and turn Left at the traffic light and drive back over Rt 202. You’ll see the hotel at your Right. Proceed to the traffic light and turn Right into the parking lot of the hotel. Their phone is: 610 647 6700.
8:00AM 11/13/2014 – 10th Annual Personalized Medicine Conference at the Harvard Medical School, Boston
REAL TIME Coverage of this Conference by Dr. Aviva Lev-Ari, PhD, RN – Director and Founder of LEADERS in PHARMACEUTICAL BUSINESS INTELLIGENCE, Boston http://pharmaceuticalintelligence.com
8:00 A.M. Welcome from Gary Gottlieb, M.D.
Opening Remarks:
Partners HealthCare is the largest healthcare organization in Massachusetts and whose founding members are Brigham and Women’s Hospital and Massachusetts General Hospital. Dr. Gottlieb has long been a supporter of personalized medicine and he will provide his vision on the role of genetics and genomics in healthcare across the many hospitals that are part of Partners HealthCare.
IT – GeneInsight – IT goal Clinicians empowered by a workflow geneticist assign cases, data entered into knowledge base, case history, GENEINSIGHT Lab — geneticists enter info in a codified way will trigger a report for the Geneticist – adding specific knowledge standardized report enters Medical Record. Available in many Clinics of Partners members.
Example: Management of Patient genetic profiles – Relationships built between the lab and the Clinician
Variety of Tools are in development
GenInsight Team –>> Pathology –>> Sunquest Relationship
Mass General (MGH) & Brigham Women’s (BWH) — Chart in EM will have the Genetic Profile of a Patients checking in
The Future
Genetic testing –>> other info (Pathology, Exams, Life Style Survey, Meds, Imaging) — Integrated Medical Record
Clinic of the Future-– >> Diagnostics – Genomics data and Variants integrated at the Clinician desk
Why is personalized medicine important to Partners?
From Healthcare system to the Specific Human Conditions
Lab translate results to therapy
Biobank +50,000 specimens links to Medical Records of patients – relevant to Clinician, Genomics to Clinical Applications
Questions from the Podium
test results are not yet available online for patients
clinicians and liability – delays from Lab to decide a variant needs to be reclassified – alert is triggered. Lab needs time to accumulated knowledge before reporting a change in state.
Training Clinicians in above type of IT infrastructure: Labs around the Nations deal with VARIANT RECLASSIFICATION- physician education is a must, Clinicians have access to REFERENCE links.
All clinicians accessing this IT infrastructure — are trained. Most are not yet trained
Coordination within Countries and Across Nations — Platforms are Group specific – PARTNERS vs the US IT Infrastructure — Genomics access to EMR — from 20% to 70% Nationwide during the Years of the Obama Adm.
Shakeout in SW linking Genetic Labs to reach Gold Standard
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