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Live Notes and Conference Coverage in Real Time. COVID19 And The Impact on Cancer Patients Town Hall with Leading Oncologists; April 4, 2020

Reporter: Stephen J. Williams, PhD 

@StephenJWillia2

UPDATED 5/11/2020 see below

This update is the video from the COVID-19 Series 4.

UPDATED 4/08/2020 see below

The Second in a Series of Virtual Town Halls with Leading Oncologist on Cancer Patient Care during COVID-19 Pandemic: What you need to know

The second virtual Town Hall with Leading International Oncologist, discussing the impact that the worldwide COVID-19 outbreak has on cancer care and patient care issues will be held this Saturday April 4, 2020.  This Town Hall Series is led by Dr. Roy Herbst and Dr. Hossain Borghaei who will present a panel of experts to discuss issues pertaining to oncology practice as well as addressing physicians and patients concerns surrounding the risk COVID-19 presents to cancer care.  Some speakers on the panel represent oncologist from France and Italy, and will give their views of the situation in these countries.

 

Speakers include:

Roy S. Herbst, MD, PhD, Ensign Professor of Medicine (Medical Oncology) and Professor of Pharmacology; Chief of Medical Oncology, Yale Cancer Center and Smilow Cancer Hospital; Associate Cancer Center Director for Translational Research, Yale Cancer Center

Hossain Borghaei, DO, MS , Chief of Thoracic Medical Oncology and Director of Lung Cancer Risk Assessment, Fox Chase Cancer Center

Giuseppe Curigliano, MD, PhD, University of Milan and Head of Phase I Division at IEO, European Institute of Oncology

Paolo Ascierto, MD National Tumor Institute Fondazione G. Pascale, Medical oncologist from National Cancer Institute of Naples, Italy

Fabrice Barlesi, MD, PhD, Thoracic oncologist Cofounder Marseille Immunopole Coordinator #ThePioneeRproject, Institut Gustave Roussy

Jack West, MD, Department of Medical Oncology & Therapeutics Research, City of Hope California

Rohit Kumar, MD Department of Medicine, Section of Pulmonary Medicine, Fox Chase Cancer Center

Christopher Manley, MD Director, Interventional Pulmonology Fox Chase Cancer Center

Hope Rugo, MD FASCO Division of Hematology and Oncology, University of California San Francisco (UCSF) Helen Diller Family Comprehensive Cancer Center

Harriet Kluger, MD Professor of Medicine (Medical Oncology); Director, Yale SPORE in Skin Cancer, Yale Cancer Center

Marianne J. Davies, DNP, MSN, RN, APRN, CNS-BC, ACNP-BC, AOCNP Assistant Professor of Nursing, Yale University

Barbara Burtness, MD Professor of Medicine (Medical Oncology);  Head and Neck Cancers Program, Yale University

 

@pharma_BI and @StephenJWillia2 will be Tweeting out live notes using #CancerCareandCOVID19

Live Notes

Part I: Practice Management

Dr. Jack West from City of Hope talked about telemedicine:  Coordination of the patient experience, which used to be face to face now moved to a telemedicine alternative.  For example a patient doing well on personalized therapy, many patients are well suited for a telemedicine experience.  A benefit for both patient and physician.

Dr. Rohit Kumar: In small cancer hospitals, can be a bit difficult to determine which patient needs to come in and which do not.  For outpatients testing for COVID is becoming very pertinent as these tests need to come back faster than it is currently.  For inpatients the issue is personal protection equipment.  They are starting to reuse masks after sterilization with dry heat.   Best to restructure the system of seeing patients and scheduling procedures.

Dr. Christopher Manley: hypoxia was an issue for COVID19 patients but seeing GI symptoms in 5% of patients.  Nebulizers have potential to aerosolize.  For patients in surgery prep room surgical masks are fine.  Ventilating these patients are a challenge as hypoxia a problem.  Myocarditis is a problem in some patients.  Diffuse encephalopathy and kidney problems are being seen. So Interleukin 6 (IL6) inhibitors are being used to reduce the cytokine storm presented in patients suffering from COVID19.

Dr. Hope Rugo from UCSF: Breast cancer treatment during this pandemic has been challenging, even though they don’t use too much immuno-suppressive drugs.  How we decide on timing of therapy and future visits is crucial.  For early stage breast cancer, neoadjuvant therapy is being used to delay surgeries.  Endocrine therapy is more often being used. In patients that need chemotherapy, they are using growth factor therapy according to current guidelines.  Although that growth factor therapy might antagonize some lung problems, there is less need for multiple visits.

For metastatic breast cancer,  high risk ER positive are receiving endocrine therapy and using telemedicine for followups.  For chemotherapy they are trying to reduce the schedules or frequency it is given. Clinical trials have been put on hold, mostly pharmokinetic studies are hard to carry out unless patients can come in, so as they are limiting patient visits they are putting these type of clinical studies on hold.

Dr. Harriet Kluger:  Melanoma community of oncologists gathered together two weeks ago to discuss guidelines and best practices during this pandemic.   The discussed that there is a lack of data on immunotherapy long term benefit and don’t know the effectiveness of neoadjuvant therapy.  She noted that many patients on BRAF inhibitors like Taflinar (dabrafenib)   or Zelboraf (vemurafenib) might get fevers as a side effect from these inhibitors and telling them to just monitor themselves and get tested if they want. Yale has also instituted a practice that, if a patient tests positive for COVID19, Yale wants 24 hours between the next patient visit to limit spread and decontaminate.

Marianne Davies:  Blood work is now being done at satellite sites to limit number of in person visits to Yale.  Usually they did biopsies to determine resistance to therapy but now relying on liquid biopsies (if insurance isn’t covering it they are working with patient to assist).  For mesothelioma they are dropping chemotherapy that is very immunosuppressive and going with maintenance pembrolizumab (Keytruda).  It is challenging in that COPD mimics the symptoms of COVID and patients are finding it difficult to get nebulizers at the pharmacy because of shortages; these patients that develop COPD are also worried they will not get the respirators they need because of rationing.

Dr. Barbara Burtness: Head and neck cancer.  Dr. Burtness stresses to patients that the survival rate now for HPV positive head and neck is much better and leaves patients with extra information on their individual cancers.  She also noted a registry or database that is being formed to track data on COVID in patients undergoing surgery  and can be found here at https://globalsurg.org/covidsurg/

About CovidSurg

  • There is an urgent need to understand the outcomes of COVID-19 infected patients who undergo surgery.
  • Capturing real-world data and sharing international experience will inform the management of this complex group of patients who undergo surgery throughout the COVID-19 pandemic, improving their clinical care.
  • CovidSurg has been designed by an international collaborating group of surgeons and anesthetists, with representation from Canada, China, Germany, Hong Kong, Italy, Korea, Singapore, Spain, United Kingdom, and the United States.

Dr. Burtness had noted that healthcare care workers are at high risk of COVID exposure during ear nose and throat (ENT) procedures as the coronavirus resides in the upper respiratory tract.  As for therapy for head and neck cancers, they are staying away from high dose cisplatin because of the nephrotoxicity seen with high dose cisplatin.  An alternative is carboplatin which generally you do not see nephrotoxicity as an adverse event (a weekly carboplatin).  Changing or increasing dose schedule (like 6 weeks Keytruda) helps reduce immunologic problems related to immunosupression and patients do not have to come in as often.

Italy and France

Dr. Paolo Ascierto:   with braf inhibitors, using in tablet form so patients can take from home.  Also they are moving chemo schedules for inpatients so longer dosing schedules.  Fever still a side effect from braf inhibitors and they require a swab to be performed to ascertain patient is COVID19 negative.  Also seeing pneumonitis as this is an adverse event from checkpoint inhibitors so looking at CT scans and nasal swab to determine if just side effect of I/O drugs or a COVID19 case.  He mentioned that their area is now doing okay with resources.

Dr. Guiseppe Curigliano mentioned about the redesign of the Italian health system with spokes and hubs of health care.  Spokes are generalized medicine while the hubs represent more specialized centers like CV hubs or cancer hubs.  So for instance, if a melanoma patient in a spoke area with COVID cases they will be referred to a hub.  He says they are doing better in his area

In the question and answer period, Dr. West mentioned that they are relaxing many HIPAA regulations concerning telemedicine.  There is a website on the Centers for Connective Health Policy that shows state by state policy on conducting telemedicine.   On immuno oncology therapy, many in the panel had many questions concerning the long term risk to COVID associated with this type of therapy.  Fabrice mentioned they try to postpone use of I/O and although Dr. Kluger said there was an idea floating around that PD1/PDL1 inhibitors could be used as a prophylactic agent more data was needed.

Please revisit this page as the recording of this Town Hall will be made available next week.

UPDATED 4/08/2020

Below find the LIVE RECORDING and TAKEAWAYS by the speakers

 

 
Town Hall Takeaways
 

Utilize Telehealth to Its Fullest Benefit

 

·       Patients doing well on targeted therapy or routine surveillance are well suited to telemedicine

·       Most patients are amenable to this, as it is more convenient for them and minimizes their exposure

·       A patient can speak to multiple specialists with an ease that was not previously possible

·       CMS has relaxed some rules to accommodate telehealth, though private insurers have not moved as quickly, and the Center for Connected Health Policy maintains a repository of current state-by-state regulations:  https://www.cchpca.org/

 

Practice Management Strategies

 

·       In the face of PPE shortages, N95 masks can be decontaminated using UV light, hydrogen peroxide, or autoclaving with dry heat; the masks can be returned to the original user until the masks are no longer suitable for use

·       For blood work or scans, the use of external satellite facilities should be explored

·       Keep pumps outside of the room so nurses can attend to them quickly

·       Limit the use of nebulizers, CPAPs, and BiPAPs due to risk of aerosolization

 

Pool Our Knowledge for Care of COVID Patients

 

·       There is now a global registry for tracking surgeries in COVID-positive cancer patients:  https://globalsurg.org/cancercovidsurg/

·       Caution is urged in the presence of cardiac complications, as ventilated patients may appear to improve, only to suffer severe myocarditis and cardiac arrest following extubation

·       When the decision is made to intubate, intubate quickly, as less invasive methods result in aerosolization and increased risks to staff

 

Study the Lessons of Europe

 

·       The health care system in Italy has been reorganized into “spokes” and “hubs,” with a number of cancer hubs; if there is a cancer patient in a spoke hospital with many COVID patients, this patient may be referred to a hub hospital

·       Postpone adjuvant treatments whenever possible

·       Oral therapies, which can be managed at home, are preferred over therapies that must be administered in a healthcare setting

·       Pneumonitis patients without fevers may be treated with steroids, but nasal swab testing is needed in the presence of concomitant fever

·       Any staff who are not needed on site should be working from home, and rotating schedules can be used to keep people healthy

·       Devise an annual epidemic control plan now that we have new lessons from COVID

 

We Must Be Advocates for Our Cancer Patients

 

·       Be proactive with other healthcare providers on behalf of patients with a good prognosis

·       Consider writing letters for cancer patients for inclusion into their chart, or addendums on notes, then encourage patients to print these out, or give it to them during their visit

·       The potential exists for a patient to be physiologically stable on a ventilator, but intolerant of decannulation; early discussions are necessary to determine reasonable expectations of care

·       Be sure to anticipate a second wave of patients, comprised of cancer patients for whom treatments and surgery have been delayed!

 

Tumor-Specific Learnings

 

Ø  Strategies in Breast Cancer:

·       In patients with early-stage disease, promote the use of neoadjuvant therapy where possible to delay the need for surgery

·       For patients with metastatic disease in the palliative setting, transition to less frequent chemotherapy dosing if possible

·       While growth factors may pose a risk in interstitial lung disease, new guidelines are emerging

 

Ø  Strategies in Melanoma:

·       The melanoma community has released specific recommendations for treatment during the pandemic:  https://www.nccn.org/covid-19/pdf/Melanoma.pdf

·       The use of BRAF/MEK inhibitors can cause fevers that are drug-related, and access to an alternate clinic where patients can be assessed is a useful resource

 

Ø  Strategies in Lung Cancer:

·       For patients who are stable on an oral, targeted therapy, telehealth check-in is a good option

·       For patients who progress on targeted therapies, increased use of liquid biopsies when appropriate can minimize use of bronchoscopy suites and other resources

·       For patients on pembrolizumab monotherapy, consider switching to a six-week dosing of 400 mg

·       Many lung cancer patients worry about “discrimination” should they develop a COVID infection; it is important to support patients and help manage expectations and concerns

 

 

UPDATED 5/11/2020

Townhall on COVID-19 and Cancer Care with Leading Oncologists Series 4

Addressing the Challenges of Cancer Care in the Community

 

 

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US Responses to Coronavirus Outbreak Expose Many Flaws in Our Medical System

Curator: Stephen J. Williams, Ph.D.

The  coronavirus pandemic has affected almost every country in every continent however, after months of the novel advent of novel COVID-19 cases, it has become apparent that the varied clinical responses in this epidemic (and outcomes) have laid bare some of the strong and weak aspects in, both our worldwide capabilities to respond to infectious outbreaks in a global coordinated response and in individual countries’ response to their localized epidemics.

 

Some nations, like Israel, have initiated a coordinated government-private-health system wide action plan and have shown success in limiting both new cases and COVID-19 related deaths.  After the initial Wuhan China outbreak, China closed borders and the government initiated health related procedures including the building of new hospitals. As of writing today, Wuhan has experienced no new cases of COVID-19 for two straight days.

 

However, the response in the US has been perplexing and has highlighted some glaring problems that have been augmented in this crisis, in the view of this writer.    In my view, which has been formulated after social discussion with members in the field ,these issues can be centered on three major areas of deficiencies in the United States that have hindered a rapid and successful response to this current crisis and potential future crises of this nature.

 

 

  1. The mistrust or misunderstanding of science in the United States
  2. Lack of communication and connection between patients and those involved in the healthcare industry
  3. Socio-geographical inequalities within the US healthcare system

 

1. The mistrust or misunderstanding of science in the United States

 

For the past decade, anyone involved in science, whether directly as active bench scientists, regulatory scientists, scientists involved in science and health policy, or environmental scientists can attest to the constant pressure to not only defend their profession but also to defend the entire scientific process and community from an onslaught of misinformation, mistrust and anxiety toward the field of science.  This can be seen in many of the editorials in scientific publications including the journal Science and Scientific American (as shown below)

 

Stepping Away from Microscopes, Thousands Protest War on Science

Boston rally coincides with annual American Association for the Advancement of Science (AAAS) conference and is a precursor to the March for Science in Washington, D.C.

byLauren McCauley, staff writer

Responding to the troubling suppression of science under the Trump administration, thousands of scientists, allies, and frontline communities are holding a rally in Boston’s Copley Square on Sunday.

#standupforscience Tweets

 

“Science serves the common good,” reads the call to action. “It protects the health of our communities, the safety of our families, the education of our children, the foundation of our economy and jobs, and the future we all want to live in and preserve for coming generations.”

It continues: 

But it’s under attack—both science itself, and the unalienable rights that scientists help uphold and protect. 

From the muzzling of scientists and government agencies, to the immigration ban, the deletion of scientific data, and the de-funding of public science, the erosion of our institutions of science is a dangerous direction for our country. Real people and communities bear the brunt of these actions.

The rally was planned to coincide with the annual American Association for the Advancement of Science (AAAS) conference, which draws thousands of science professionals, and is a precursor to the March for Science in Washington, D.C. and in cities around the world on April 22.

 

Source: https://www.commondreams.org/news/2017/02/19/stepping-away-microscopes-thousands-protest-war-science

https://images.app.goo.gl/UXizCsX4g5wZjVtz9

 

https://www.washingtonpost.com/video/c/embed/85438fbe-278d-11e7-928e-3624539060e8

 

 

The American Association for Cancer Research (AACR) also had marches for public awareness of science and meaningful science policy at their annual conference in Washington, D.C. in 2017 (see here for free recordings of some talks including Joe Biden’s announcement of the Cancer Moonshot program) and also sponsored events such as the Rally for Medical Research.  This patient advocacy effort is led by the cancer clinicians and scientific researchers to rally public support for cancer research for the benefit of those affected by the disease.

Source: https://leadingdiscoveries.aacr.org/cancer-patients-front-and-center/

 

 

     However, some feel that scientists are being too sensitive and that science policy and science-based decision making may not be under that much of a threat in this country. Yet even as some people think that there is no actual war on science and on scientists they realize that the public is not engaged in science and may not be sympathetic to the scientific process or trust scientists’ opinions. 

 

   

From Scientific American: Is There Really a War on Science? People who oppose vaccines, GMOs and climate change evidence may be more anxious than antagonistic

 

Certainly, opponents of genetically modified crops, vaccinations that are required for children and climate science have become louder and more organized in recent times. But opponents typically live in separate camps and protest single issues, not science as a whole, said science historian and philosopher Roberta Millstein of the University of California, Davis. She spoke at a standing-room only panel session at the American Association for the Advancement of Science’s annual meeting, held in Washington, D.C. All the speakers advocated for a scientifically informed citizenry and public policy, and most discouraged broadly applied battle-themed rhetoric.

 

Source: https://www.scientificamerican.com/article/is-there-really-a-war-on-science/

 

      In general, it appears to be a major misunderstanding by the public of the scientific process, and principles of scientific discovery, which may be the fault of miscommunication by scientists or agendas which have the goals of subverting or misdirecting public policy decisions from scientific discourse and investigation.

 

This can lead to an information vacuum, which, in this age of rapid social media communication,

can quickly perpetuate misinformation.

 

This perpetuation of misinformation was very evident in a Twitter feed discussion with Dr. Eric Topol, M.D. (cardiologist and Founder and Director of the Scripps Research Translational  Institute) on the US President’s tweet on the use of the antimalarial drug hydroxychloroquine based on President Trump referencing a single study in the International Journal of Antimicrobial Agents.  The Twitter thread became a sort of “scientific journal club” with input from international scientists discussing and critiquing the results in the paper.  

 

Please note that when we scientists CRITIQUE a paper it does not mean CRITICIZE it.  A critique is merely an in depth analysis of the results and conclusions with an open discussion on the paper.  This is part of the normal peer review process.

 

Below is the original Tweet by Dr. Eric Topol as well as the ensuing tweet thread

 

https://twitter.com/EricTopol/status/1241442247133900801?s=20

 

Within the tweet thread it was discussed some of the limitations or study design flaws of the referenced paper leading the scientists in this impromptu discussion that the study could not reasonably conclude that hydroxychloroquine was not a reliable therapeutic for this coronavirus strain.

 

The lesson: The public has to realize CRITIQUE does not mean CRITICISM.

 

Scientific discourse has to occur to allow for the proper critique of results.  When this is allowed science becomes better, more robust, and we protect ourselves from maybe heading down an incorrect path, which may have major impacts on a clinical outcome, in this case.

 

 

2.  Lack of communication and connection between patients and those involved in the healthcare industry

 

In normal times, it is imperative for the patient-physician relationship to be intact in order for the physician to be able to communicate proper information to their patient during and after therapy/care.  In these critical times, this relationship and good communication skills becomes even more important.

 

Recently, I have had multiple communications, either through Twitter, Facebook, and other social media outlets with cancer patients, cancer advocacy groups, and cancer survivorship forums concerning their risks of getting infected with the coronavirus and how they should handle various aspects of their therapy, whether they were currently undergoing therapy or just about to start chemotherapy.  This made me realize that there were a huge subset of patients who were not receiving all the information and support they needed; namely patients who are immunocompromised.

 

These are patients represent

  1. cancer patient undergoing/or about to start chemotherapy
  2. Patients taking immunosuppressive drugs: organ transplant recipients, patients with autoimmune diseases, multiple sclerosis patients
  3. Patients with immunodeficiency disorders

 

These concerns prompted me to write a posting curating the guidance from National Cancer Institute (NCI) designated cancer centers to cancer patients concerning their risk to COVID19 (which can be found here).

 

Surprisingly, there were only 14 of the 51 US NCI Cancer Centers which had posted guidance (either there own or from organizations like NCI or the National Cancer Coalition Network (NCCN).  Most of the guidance to patients had stemmed from a paper written by Dr. Markham of the Fred Hutchinson Cancer Center in Seattle Washington, the first major US city which was impacted by COVID19.

 

Also I was surprised at the reactions to this posting, with patients and oncologists enthusiastic to discuss concerns around the coronavirus problem.  This led to having additional contact with patients and oncologists who, as I was surprised, are not having these conversations with each other or are totally confused on courses of action during this pandemic.  There was a true need for each party, both patients/caregivers and physicians/oncologists to be able to communicate with each other and disseminate good information.

 

Last night there was a Tweet conversation on Twitter #OTChat sponsored by @OncologyTimes.  A few tweets are included below

https://twitter.com/OncologyTimes/status/1242611841613864960?s=20

https://twitter.com/OncologyTimes/status/1242616756658753538?s=20

https://twitter.com/OncologyTimes/status/1242615906846547978?s=20

 

The Lesson:  Rapid Communication of Vital Information in times of stress is crucial in maintaining a good patient/physician relationship and preventing Misinformation.

 

3.  Socio-geographical Inequalities in the US Healthcare System

It has become very clear that the US healthcare system is fractioned and multiple inequalities (based on race, sex, geography, socio-economic status, age) exist across the whole healthcare system.  These inequalities are exacerbated in times of stress, especially when access to care is limited.

 

An example:

 

On May 12, 2015, an Amtrak Northeast Regional train from Washington, D.C. bound for New York City derailed and wrecked on the Northeast Corridor in the Port Richmond neighborhood of Philadelphia, Pennsylvania. Of 238 passengers and 5 crew on board, 8 were killed and over 200 injured, 11 critically. The train was traveling at 102 mph (164 km/h) in a 50 mph (80 km/h) zone of curved tracks when it derailed.[3]

Some of the passengers had to be extricated from the wrecked cars. Many of the passengers and local residents helped first responders during the rescue operation. Five local hospitals treated the injured. The derailment disrupted train service for several days. 

(Source Wikipedia https://en.wikipedia.org/wiki/2015_Philadelphia_train_derailment)

What was not reported was the difficulties that first responders, namely paramedics had in finding an emergency room capable of taking on the massive load of patients.  In the years prior to this accident, several hospitals, due to monetary reasons, had to close their emergency rooms or reduce them in size. In addition only two in Philadelphia were capable of accepting gun shot victims (Temple University Hospital was the closest to the derailment but one of the emergency rooms which would accept gun shot victims. This was important as Temple University ER, being in North Philadelphia, is usually very busy on any given night.  The stress to the local health system revealed how one disaster could easily overburden many hospitals.

 

Over the past decade many hospitals, especially rural hospitals, have been shuttered or consolidated into bigger health systems.  The graphic below shows this

From Bloomberg: US Hospital Closings Leave Patients with Nowhere to go

 

 

https://images.app.goo.gl/JdZ6UtaG3Ra3EA3J8

 

Note the huge swath of hospital closures in the midwest, especially in rural areas.  This has become an ongoing problem as the health care system deals with rising costs.

 

Lesson:  Epidemic Stresses an already stressed out US healthcare system

 

Please see our Coronavirus Portal at

https://pharmaceuticalintelligence.com/coronavirus-portal/

 

for more up-to-date scientific, clinical information as well as persona stories, videos, interviews and economic impact analyses

and @pharma_BI

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Responses to the #COVID-19 outbreak from Oncologists, Cancer Societies and the NCI: Important information for cancer patients

Curator: Stephen J. Williams, Ph.D.

UPDATED 3/20/2020

Among the people who are identified at risk of coronovirus 2019 infection and complications of the virus include cancer patients undergoing chemotherapy, who in general, can be immunosuppressed, especially while patients are undergoing their treatment.  This has created anxiety among many cancer patients as well as their care givers and prompted many oncologist professional groups, cancer societies, and cancer centers to formulate some sort of guidelines for both the cancer patients and the oncology professional with respect to limiting the risk of infection to coronavirus (COVID19). 

 

This information will be periodically updated and we are working to get a Live Twitter Feed to bring oncologist and cancer patient advocacy groups together so up to date information can be communicated rapidly.  Please see this page regularly for updates as new information is curated.

IN ADDITION, I will curate a listing of drugs with adverse events of immunosuppression for people who might wonder if the medications they are taking are raising their risk of infections.

Please also see @pharma_BI for updates as well.

Please also see our Coronavirus Portal at https://pharmaceuticalintelligence.com/coronavirus-portal/

For ease of reading information for patients are BOLDED and in RED

ASCO’s Response to COVID-19

From the Cancer Letter: The following is a guest editorial by American Society of Clinical Oncology (ASCO) Executive Vice President and Chief Medical Officer Richard L. Schilsky MD, FACP, FSCT, FASCO. This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage, as well as the latest meeting cancellations, is available here.

 

The worldwide spread of the coronavirus (COVID-19) presents unprecedented challenges to the cancer care delivery system.

Our patients are already dealing with a life-threatening illness and are particularly vulnerable to this viral infection, which can be even more deadly for them. Further, as restrictions in daily movement and social distancing take hold, vulnerable patients may be disconnected from friends, family or other support they need as they manage their cancer.

As providers, we rely on evidence and experience when treating patients but now we face uncertainty. There are limited data to guide us in the specific management of cancer patients confronting COVID-19 and, at present, we have no population-level guidance regarding acceptable or appropriate adjustments of treatment and practice operations that both ensure the best outcome for our patients and protect the safety of our colleagues and staff.

As normal life is dramatically changed, we are all feeling anxious about the extreme economic challenges we face, but these issues are perhaps even more difficult for our patients, many of whom are now facing interruption

As we confront this extraordinary situation, the health and safety of members, staff, and individuals with cancer—in fact, the entire cancer community—is ASCO’s highest priority.

ASCO has been actively monitoring and responding to the pandemic to ensure that accurate information is readily available to clinicians and their patients. Recognizing that this is a rapidly evolving situation and that limited oncology-specific, evidence-based information is available, we are committed to sharing what is known and acknowledging what is unknown so that the most informed decisions can be made.

To help guide oncology professionals as they deal with the impact of coronavirus on both their patients and staff, ASCO has collated questions from its members, posted responses at asco.org and assembled a compendium of additional resources we hope will be helpful as the virus spreads and the disease unfolds. We continue to receive additional questions regarding clinical care and we are updating our FAQs on a regular basis.

We hope this information is helpful even when it merely confirms that there are no certain answers to many questions. Our answers are based on the best available information we identify in the literature, guidance from public health authorities, and input received from oncology and infectious disease experts.

For patients, we have posted a blog by Dr. Merry Jennifer Markham, chair of ASCO’s Cancer Communications Committee. This can be found on Cancer.Net, ASCO’s patient information website, and it provides practical guidance to help patients reduce their risk of exposure, better understand COVID-19 symptoms, and locate additional information.

This blog is available both in English and Spanish. Additional blog posts addressing patient questions will be posted as new questions are received and new information becomes available.

Find below a Tweet from Dr.Markham which includes links to her article on COVID-19 for cancer patients

https://twitter.com/DrMarkham/status/1237797251038220289?s=20

NCCN’s Response to COVID-19 and COVID-19 Resources

JNCCN: How to Manage Cancer Care during COVID-19 Pandemic

Experts from the Seattle Cancer Care Alliance (SCCA)—a Member Institution of the National Comprehensive Cancer Network® (NCCN®)—are sharing insights and advice on how to continue providing optimal cancer care during the novel coronavirus (COVID-19) pandemic. SCCA includes the Fred Hutchinson Cancer Research Center and the University of Washington, which are located in the epicenter of the COVID-19 outbreak in the United States. The peer-reviewed article sharing best practices is available for free online-ahead-of-print via open access at JNCCN.org.

Coronavirus disease 2019 (COVID-19) Resources for the Cancer Care Community

NCCN recognizes the rapidly changing medical information relating to COVID-19 in the oncology ecosystem, but understands that a forum for sharing best practices and specific institutional responses may be helpful to others.  Therefore, we are expeditiously providing documents and recommendations developed by NCCN Member Institutions or Guideline Panels as resources for oncology care providers. These resources have not been developed or reviewed by the standard NCCN processes, and are provided for information purposes only. We will post more resources as they become available so check back for additional updates.

Documents

Links

National Cancer Institute Response to COVID-19

More information at https://www.cancer.gov/contact/emergency-preparedness/coronavirus

What people with cancer should know: https://www.cancer.gov/coronavirus

Get the latest public health information from CDC: https://www.coronavirus.gov

Get the latest research information from NIH: https://www.nih.gov/coronavirus

 

Coronavirus: What People with Cancer Should Know

ON THIS PAGE

Both the resources at cancer.gov (NCI) as well as the resources from ASCO are updated as new information is evaluated and more guidelines are formulated by members of the oncologist and cancer care community and are excellent resources for those living with cancer, and also those who either care for cancer patients or their family and relatives.

Related Resources for Patients (please click on links)

 

 

 

Some resources and information for cancer patients from Twitter

Twitter feeds which may be useful sources of discussion and for cancer patients include:

 

@OncLive OncLive.com includes healthcare information for patients and includes videos and newsletters

 

 

@DrMarkham Dr. Markham is Chief of Heme-Onc & gyn med onc @UF | AD Med Affairs @UFHealthCancer and has collected very good information for patients concerning #Covid19 

 

 

@DrMaurieMarkman Dr. Maurie Markman is President of Medicine and Science (Cancer Centers of America, Philadelphia) @CancerCenter #TreatThePerson #Oncology #Genomics #PrecisionMedicine and hosts a great online live Tweet feed discussing current topics in cancer treatment and care for patients called #TreatThePerson Chat

UPDATED 3/20/2020 INFORMATION FROM NCI DESIGNATED CANCER CENTERS FOR PATIENTS/PROVIDERS

The following is a listing with links of NCI Designated Comprehensive Cancer Centers and some select designated Cancer Centers* which have information on infectious risk guidance for cancer patients as well as their physicians and caregivers.   There are 51 NCI Comprehensive Cancer Centers and as more cancer centers formulate guidance this list will be updated. 

 

Cancer Center State Link to COVID19 guidance
City of Hope CA Advice for cancer patients, survivors and caregivers
Jonsson Cancer Center at UCLA CA Cancer and COVID19
UCSF Hellen Diller Family Comprehensive Cancer CA COVID-19 Links for Patients and Providers
Lee Moffit FL Protecting against Coronavirus 19
University of Kansas Cancer Center* KS COVID19 Info for patients
Barbara & Karmanos Cancer Institute (Wayne State) MI COVID19 Resources
Rogel Cancer Center (Univ of Michigan) MI COVID19 Patient Specific Guidelines
Alvin J. Siteman Cancer Center (MO) Coronavirus
Fred & Pamela Buffet CC* NE Resources for Patients and Providers
Rutgers Cancer Institute of NJ NJ What patients should know about COVID19
Memorial Sloan Kettering NY What COVID19 means for cancer patients
Herbert Irving CC (Columbia University) NY Coronavirus Resource Center
MD Anderson Cancer  TX Planning for Patients, Providers
Hunstman Cancer Center UT COVID19 What you need to know
Fred Hutchinson WA COVID19 What patients need to know

 

 

Please also see related information on Coronavirus 2019 and Cancer and Immunotherapy at the following links on the Open Access Online Journal:

Volume Two: Cancer Therapies: Metabolic, Genomics, Interventional, Immunotherapy and Nanotechnology in Therapy Delivery 

at

https://pharmaceuticalintelligence.com/biomed-e-books/series-c-e-books-on-cancer-oncology/volume-two-immunotherapy-in-cancer-radiation-oncology/

AND

Coronavirus Portal

 

 

 

 

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Live Conference Coverage @Medcitynews Converge 2018 Philadelphia: The Davids vs. the Cancer Goliath Part 2

8:40 – 9:25 AM 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.

Start Time End Time Company
8:40 8:48 3Derm
8:49 8:57 CNS Pharmaceuticals
8:58 9:06 Cubismi
9:07 9:15 CytoSavvy
9:16 9:24 PotentiaMetrics

Speakers:
Liz Asai, CEO & Co-Founder, 3Derm Systems, Inc. @liz_asai
John M. Climaco, CEO, CNS Pharmaceuticals @cns_pharma 

John Freyhof, CEO, CytoSavvy
Robert Palmer, President & CEO, PotentiaMetrics @robertdpalmer 
Moira Schieke M.D., Founder, Cubismi, Adjunct Assistant Prof UW Madison @cubismi_inc

 

3Derm Systems

3Derm Systems is an image analysis firm for dermatologic malignancies.  They use a tele-medicine platform to accurately triage out benign malignancies observed from the primary care physician, expediate those pathology cases if urgent to the dermatologist and rapidly consults with you over home or portable device (HIPAA compliant).  Their suite also includes a digital dermatology teaching resource including digital training for students and documentation services.

 

CNS Pharmaceuticals

developing drugs against CNS malignancies, spun out of research at MD Anderson.  They are focusing on glioblastoma and Berubicin, an anthracycline antiobiotic (TOPOII inhibitor) that can cross the blood brain barrier.  Berubicin has good activity in a number of animal models.  Phase I results were very positive and Phase II is scheduled for later in the year.  They hope that the cardiotoxicity profile is less severe than other anthracyclines.  The market opportunity will be in temazolamide resistant glioblastoma.

Cubismi

They are using machine learning and biomarker based imaging to visualize tumor heterogeneity. “Data is the new oil” (Intel CEO). We need prediction machines so they developed a “my body one file” system, a cloud based data rich file of a 3D map of human body.

CUBISMI IS ON A MISSION TO HELP DELIVER THE FUTURE PROMISE OF PRECISION MEDICINE TO CURE DISEASE AND ASSURE YOUR OPTIMAL HEALTH.  WE ARE BUILDING A PATIENT-DOCTOR HEALTH DATA EXCHANGE PLATFORM THAT WILL LEVERAGE REVOLUTIONARY MEDICAL IMAGING TECHNOLOGY AND PUT THE POWER OF HEALTH DATA INTO THE HANDS OF YOU AND YOUR DOCTORS.

 

CytoSavvy

CytoSavvy is a digital pathology company.  They feel AI has a fatal flaw in that no way to tell how a decision was made. Use a Shape Based Model Segmentation algorithm which uses automated image analysis to provide objective personalized pathology data.  They are partnering with three academic centers (OSU, UM, UPMC) and pool data and automate the rule base for image analysis.

CytoSavvy’s patented diagnostic dashboards are intuitive, easy–to-use and HIPAA compliant. Our patented Shape-Based Modeling Segmentation (SBMS) algorithms combine shape and color analysis capabilities to increase reliability, save time, and improve decisions. Specifications and capabilities for our web-based delivery system follow.

link to their white paper: https://www.cytosavvy.com/resources/healthcare-ai-value-proposition.pdf

PotentialMetrics

They were developing a diagnostic software for cardiology epidemiology measuring outcomes however when a family member got a cancer diagnosis felt there was a need for outcomes based models for cancer treatment/care.  They deliver real world outcomes for persoanlized patient care to help patients make decisions on there care by using a socioeconomic modeling integrated with real time clinical data.

Featured in the Wall Street Journal, using the informed treatment decisions they have generated achieve a 20% cost savings on average.  There research was spun out of Washington University St. Louis.

They have concentrated on urban markets however the CEO had mentioned his desire to move into more rural areas of the country as there models work well for patients in the rural setting as well.

Please follow on Twitter using the following #hash tags and @pharma_BI 

#MCConverge

#cancertreatment

#healthIT

#innovation

#precisionmedicine

#healthcaremodels

#personalizedmedicine

#healthcaredata

And at the following handles:

@pharma_BI

@medcitynews

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University Children’s Hospital Zurich (Universitäts-Kinderspital Zürich), Switzerland – A Prominent Center of Pediatric Research and Medicine

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

 

University Children’s Hospital Zurich (Universitäts-Kinderspital Zürich —  http://www.kispi.uzh.ch), in Switzerland, is the largest specialized, child and adolescent hospital in the country and one of the leading research centers for pediatric and youth medicine in Europe. The hospital, which has about 220 beds, numerous outpatient clinics, a day clinic, an interdisciplinary emergency room, and a specialized rehabilitation center, is a non-profit private institution that offers a comprehensive range of more than 40 medical sub-specializations, including heart conditions, bone marrow transplantation and burns. There are approximately 2,200 physicians, nurses, and other allied health care and administrative personnel employed at the hospital.

Just as important, the hospital houses the Children’s Research Center (CRC), the first research center in Switzerland that is solely dedicated to pediatric research, and is on par with the largest children’s clinics in the world. The research center provides a strong link between research and clinical experience to ensure that the latest scientific findings are made available to patients and implemented in life-saving therapies. By developing highly precise early diagnoses, innovative therapeutic approaches and effective new drugs, the researchers aim to provide a breakthrough in prevention, treatment and cure of common and, especially, rare diseases in children.

Several significant milestones have been reached over the past year. One important project under way is approval by the hospital management board and Zurich city council to construct a new building, projected to be completed in 2021. The new Children’s Hospital will constitute two main buildings; one building will house the hospital with around 200 beds, and the other building will house university research and teaching facilities.

In the ongoing quest for growing demands for quality, safety and efficiency that better serve patients and their families, the hospital management established a new role of Chief Operating Officer. This new position is responsible for the daily operation of the hospital, focusing on safety and clinical results, building a service culture and producing strong financial results. Greater emphasis on clinical outcomes, patient satisfaction and partnering with physicians, nurses, and other medical and administrative staff is all part of developing a thriving and lasting hospital culture.

Recently, the hospital’s Neurodermatitis Unit in cooperation with Christine Kuehne – Center for Allergy Research and Education (CK-Care), one of Europe’s largest private initiatives in the field of allergology, has won the “Interprofessionality Award” from the Swiss Academy of Medical Sciences.  This award highlights best practices among doctors, nurses and medical staff in organizations who work together to diagnose and treat the health and well-being of patients, especially children with atopic dermatitis and their families.

At the northern end of Lake Zurich and between the mountain summit of the Uetliberg and Zurichberg, Children’s Hospital is located in the center of the residential district of Hottingen.

 

childrens-hospital4childrens-hospital3childrens-hospital2childrens-hospital1

Image SOURCE: Photograph courtesy of Children’s Hospital Zurich (Universitäts-Kinderspital Zürich), Switzerland. Interior and exterior photographs of the hospital.

 

Below is my interview with Hospital Director and Chief Executive Officer Markus Malagoli, Ph.D., which occurred in December, 2016.

How do you keep the spirit of innovation alive? 

Dr. Malagoli: Innovation in an organization, such as the University Children’s Hospital, correlates to a large extent on the power to attract the best and most innovative medical team and administrative people. It is our hope that by providing our employees with the time and financial resources to undertake needed research projects, they will be opened to further academic perspectives. At first sight, this may seem to be an expensive opportunity. However, in the long run, we have significant research under way in key areas which benefits children ultimately. It also gives our hospital the competitive edge in providing quality care and helps us recruit the best physicians, nurses, therapists, social workers and administrative staff.

The Children’s Hospital Zurich is nationally and internationally positioned as highly specialized in the following areas:

  • Cardiology and cardiac surgery: pediatric cardiac center,
  • Neonatal and malformation surgery as well as fetal surgery,
  • Neurology and neurosurgery as well as neurorehabilitation,
  • Oncology, hematology and immunology as well as oncology and stem cell transplants,
  • Metabolic disorders and endocrinology as well as newborn screening, and
  • Combustion surgery and plastic reconstructive surgery.

We provide patients with our special medical expertise, as well as an expanded  knowledge and new insights into the causes, diagnosis, treatment and prophylaxis of diseases, accidents or deformities. We have more than 40 medical disciplines that cover the entire spectrum of pediatrics as well as child and youth surgery.

As an example, for many years, we have treated all congenital and acquired heart disease in children. Since 2004, specialized heart surgery and post-operative care in our cardiac intensive care unit have been carried out exclusively in our child-friendly hospital. A separate heart operation area was set up for this purpose. The children’s heart center also has a modern cardiac catheter laboratory for children and adolescents with all diagnostic and catheter-interventional therapeutic options. Heart-specific non-invasive diagnostic possibilities using MRI are available as well as a large cardiology clinic with approximately 4,500 outpatient consultations per year. In April 2013, a special ward only for cardiac patients was opened and our nursing staff is highly specialized in the care of children with heart problems.

In addition to the advanced medical diagnostics and treatment of children, we also believe in the importance of caring and supporting families of sick children with a focus on their psychosocial well-being. For this purpose, a team of specialized nurses, psychiatrists, psychologists, and social workers are available. Occasionally, the children and their families need rehabilitation and we work with a team of specialists to plan and organize the best in-house or out-patient rehabilitation for the children and their families.

We also provide therapeutic, rehabilitation and social services that encompass nutritional advice, art and expression therapy, speech therapy, physical therapy, psychomotor therapy, a helpline for rare diseases, pastoral care, social counseling, and even hospital clowns. Our hospital teams work together to provide our patients with the best care so they are on the road to recovery in the fastest possible way.

What draws patients to Children’s Hospital?

Dr. Malagoli: Our hospital depends heavily on complex, interdisciplinary cases. For many diagnosis and treatments, our hospital is the last resort for children and adolescents in Switzerland and even across other countries. Our team is fully committed to the welfare of the patients they treat in order to deal with complex medical cases, such as diseases and disorders of the musculo-skeletal system and connective tissue, nervous system, respiratory system, digestive system, and ear, nose and throat, for example.

Most of our patients come from Switzerland and other cantons within the country, yet other patients come from as far away as Russia and the Middle East. Our hospital sees about 80,000 patients each year in the outpatient clinic for conditions, such as allergic pulmonary diseases, endocrinology and diabetology, hepatology, and gastroenterology; about 7,000 patients a year are seen for surgery; and about 37,000 patients a year are treated in the emergency ward.

We believe that parents are not visitors; they belong to the sick child’s healing, growth, and development. This guiding principle is a challenge for us, because we care not only for sick children, but also for their families, who may need personal or financial resources. Many of our services for parents, for example, are not paid by the Swiss health insurance and we depend strongly on funds from private institutions. We want to convey the feeling of security to children and adolescents of all ages and we involve the family in the recovery process.

What are the hospital’s strengths?

Dr. Malagoli: A special strength of our hospital is the interdisciplinary thinking of our teams. In addition to the interdisciplinary emergency and intensive care units, there are several internal institutionalized meetings, such as the uro-nephro-radiological conference on Mondays, the oncological conference and the gastroenterological meeting on Tuesdays,  and the pneumological case discussion on Wednesdays, where complex cases are discussed among our doctors. Foreign doctors are welcome to these meetings, and cases are also discussed at the appropriate external medical conferences.

Can you discuss some of the research projects under way at the Children’s Research Center (CRC)?

Dr. Malagoli: Our Children’s Research Center, the first research center in Switzerland focused on pediatric research, works closely with our hospital team. From basic research to clinical application, the hospital’s tasks in research and teaching is at the core of the Children’s Research Center for many young and established researchers and, ultimately, also for patients.

Our research projects focus on:

  • Behavior of the nervous, metabolic, cardiovascular and immune system in all stages of growth and development of the child’s condition,
  • Etiology (causes of disease) and treatment of genetic diseases,
  • Tissue engineering of the skin and skin care research: from a few cells of a child,  complex two-layered skin is produced in the laboratory for life-saving measures after severe burns and treatment of congenital anomalies of the skin,
  • Potential treatment approaches of the most severe infectious diseases, and
  • Cancer diseases of children and adolescents.

You are making great strides in diagnostic work in the areas of Hematology, Immumology, Infectiology and Oncology. Would you elaborate on this particular work that is taking place at the hospital?

Dr. Malagoli: The Department of Image Diagnostics handles radiological and ultrasonographic examinations, and the numerous specialist labs offer a complete  range of laboratory diagnostics.

The laboratory center makes an important contribution to the clarification and treatment of disorders of immune defense, blood and cancer, as well as infections of all kinds and severity. Our highly specialized laboratories offer a large number of analyzes which are necessary in the assessment of normal and pathological cell functions and take into account the specifics and requirements of growth and development in children and infants.

The lab center also participates in various clinical trials and research projects. This allows on-going validation and finally introducing the latest test methods.

The laboratory has been certified as ISO 9001 by the Swiss Government since 2002 and has met the quality management system requirements on meeting patient expectations and delivering customer satisfaction. The interdisciplinary cooperation and careful communication of the laboratory results are at the center of our activities. Within the scope of our quality assurance measures, we conduct internal quality controls on a regular basis and participate in external tests. Among other things, the work of the laboratory center is supervised by the cantonal medicine committee and Swissmedic organization.

Additionally, the Metabolism Laboratory  offers a wide variety of biochemical and molecular diagnostic analysis, including those for the following areas:

  • Disorders in glycogen and fructose metabolism,
  • Lysosomal disorders,
  • Disorders of biotin and vitamin B12 metabolism,
  • Urea cycle disorders and Maple Syrup Urine Disease (MSUD),
  • Congenital disorders of protein glycosylation, and
  • Hereditary disorders of connective tissue, such as Ehlers-Danlos Syndrome and Marfan Syndrome.

Screening for newborn conditions is equally important. The Newborn Screening Laboratory examines all newborn children in Switzerland for congenital metabolic and hormonal diseases. Untreated, the diseases detected in the screening lead in most cases to serious damage to different organs, but especially to the development of the brain. Thanks to the newborn screening, the metabolic and hormonal diseases that are being sought can be investigated by means of modern methods shortly after birth. For this, only a few drops of blood are necessary, which are taken from the heel on the third or fourth day after birth. On a filter paper strip, these blood drops are sent to the laboratory of the Children’s Hospital Zurich, where they are examined for the following diseases:

  • Phenylketonuria (PKU),
  • Hypothyroidism,
  • MCAD deficiency,
  • Adrenogenital Syndrome (AGS),
  • Galactosemia,
  • Biotinide deficiency,
  • Cystic Fibrosis (CF),
  • Glutaraziduria Type 1 (GA-1), and
  • Maple Syrup Urine Disease (MSUD).

Ongoing physician medical education and executive training is important for the overall well-being of the hospital. Would you describe the program and the courses?

Dr. Malagoli:  We place a high priority on medical education and training with a focus on children, youth, and their families. The various departments of the hospital offer regular specialist training courses for interested physicians at regular intervals. Training is available in the following areas:

  • Anesthesiology,
  • Surgery,
  • Developmental Pediatrics,
  • Cardiology,
  • Clinical Chemistry and Biochemistry,
  • Neuropediatrics,
  • Oncology,
  • Pediatrics, and
  • Rehabilitation.

As a training hospital, we have built an extensive network or relationships with physicians in Switzerland as well as other parts of the world, who take part in our ongoing medical education opportunities that focus on specialized pediatrics and  pediatric surgery. Also, newly trained, young physicians who are in private practice or affiliated with other children’s hospitals often take part in our courses.

We also offer our hospital management and leaders from other organizations professional development in the areas of leadership or specialized competence training. We believe that all executives in leadership or management roles contribute significantly to our success and to a positive working climate. That is why we have developed crucial training in specific, work-related courses, including planning and communications skills, professional competence, and entrepreneurial development.

How is Children’s Hospital transforming health care? 

Dr. Malagoli: The close cooperation between doctors, nurses, therapists and social workers is a key success factor in transforming health care. We strive for comprehensive child care that does not only focus on somatic issues but also on psychological support for patients and their families and social re-integration. However, it becomes more and more difficult to finance all the necessary support services.

Many supportive services, for example, for parents and families of sick children are not paid by health insurance in Switzerland and we do not receive financial support from the Swiss Government. Since 2012, we have the Swiss Diagnosis Related Groups (DRG) guidelines, a new tariff system for inpatient hospital services, that regulates costs for treatment in hospitals all over the country and those costs do not consider the amount of extra services we provide for parents and families as a children’s hospital. Those DRG principles mostly are for hospitals who treat adult patients.

Since you stepped into your role as CEO, how have you changed the way that you deliver health care?

Dr. Malagoli: I have definitely not reinvented health care! Giving my staff the space for individual development and the chance to realize their ideas is probably my main contribution to our success. Working with children is for many people motivating and enriching. We benefit from that, too. Moreover, we have managed to build up a culture of confidence and mutual respect – we call it the “Kispi-spirit”. “Kispi” as abbreviation of “Kinderspital.” Please visit our special recruiting site, which is www.kispi-spirit.ch.

I can think of a few examples where our doctors and medical teams have made a difference in the lives of our patients. Two of our physicians – PD (Privatdozent, a private university teacher) Dr. med. Alexander Moller and Dr. med. Florian Singer, Ph.D. – are involved in the development of new pulmonary functions tests which allow us to diagnose chronic lung diseases at an early stage in young children.

  • Often times, newly born babies have a lung disease but do not show any specific symptoms, such as coughing. One of these new tests measures lung function based on inhaling and exhaling pure oxygen, rather than using the standard spirometry test used in children and adults to assess how well an infant’s lungs work by measuring how much air they inhale, how much they exhale and how quickly they exhale. The new test is currently part of a clinical routine in children with cystic fibrosis as well as in clinical trials in Europe. The test is so successful that the European Respiratory Society presented Dr. med. Singer, Ph.D., with the ‘Pediatric Research Award’ in 2015.
  • Another significant research question among the pediatric pulmonary disease community is how asthma can be diagnosed reliably and at an earlier stage. PD Dr. med. Moller, chief physician of Pneumology at the hospital, has high hopes in a new way to measure exhaled air via mass spectrometry. If it succeeds, it will be able to evaluate changes in the lungs of asthmatics or help with more specific diagnoses of pneumonia.

In what ways have you built greater transparency, accountability and quality improvement for the benefit of patients?

Dr. Malagoli: Apart from the quality measures which are prescribed by Swiss law, we have decided not to strive for quality certifications and accreditations. We focus on outcome quality, record our results in quality registers and compare our outcome internationally with the best in class.

Our team of approximately 2,200 specialized physicians largely comes from Switzerland, although we have attracted a number of doctors from countries such as Germany, Portugal, Italy, Austria, and even Serbia, Turkey, Macedonia, Slovakia, and Croatia.

We recently conducted an employee satisfaction survey, which showed about 88 percent of employees were very satisfied or satisfied with their working conditions at the hospital and the job we are doing with patients and their families. This ranking is particularly gratifying for us as a service provider for the children and families we serve.

How does your volunteer program help families better deal with hospitalized children?

Dr. Malagoli: We have an enormous commitment from volunteers to care for hospitalized children and we are grateful to them. We offer our patients and their families child care, dog therapy, and even parenting by the Aladdin Foundation, a volunteer visiting service for hospitalized children to relieve parents and relatives and help young patients stay in hospital to recover quickly. The volunteers visit the child in the absence of the parents and are fully briefed on the child’s condition and care plan. The handling of care request usually takes no more than 24 hours and is free of charge. The assignments range from one-off visits to daily care for several weeks.

malagoli_m_905

Image SOURCE: Photograph of Hospital Director and Chief Executive Officer Markus Malagoli, Ph.D., courtesy of Children’s Hospital Zurich (Universitäts-Kinderspital Zürich), Switzerland.  

Markus Malagoli, Ph.D.
Director and Chief Executive Officer

Markus Malagoli, Ph.D., has been Hospital Director and Chief Executive Officer of the University Children’s Hospital Zurich (Universitäts-Kinderspital Zürich), since 2007.

Prior to his current role, Dr. Malagoli served as Chairman of Hospital Management and Head of Geriatrics of the Schaffhausen-Akutspital, the only public hospital in the Canton of Schaffhausen, from 2003 through 2007, where he was responsible for 10 departments, including surgery, internal medicine, obstetrics/gynecology, rheumatology/rehabilitation, throat and nose, eyes, radiology, anesthesia, hospital pharmacy and administration. The hospital employs approximately 1,000 physicians, nursing staff, other medical personal, as well as administration and operational services employees. On average, around 9,000 individuals are treated in the hospital yearly. Previously, he was Administrative Director at the Hospital from 1996 through 2003.

Dr. Malagoli began his career at Ciba-Geigy in 1985, spending 11 years in the company. He worked in Business Accounting in Basel, and a few years later, became Head of the Production Information System department in Basel. He then was transferred to Ciba-Geigy in South Africa as Controller/Treasurer and returned to Basel as Project Manager for the SAP Migration Project in Accounting.

Dr. Malagoli received his B.A. degree in Finance and Accounting and a Ph.D. in Business Administration at the University of St. Gallen.

He is a member of the Supervisory Board of Schaffhausen-Akutspital and President of the Ungarbühl in Schaffhausen, a dormitory for individuals with developmental impairments.

Editor’s note:

We would like to thank Manuela Frey, communications manager, University Children’s Hospital Zurich, for the help and support she provided during this interview.

 

REFERENCE/SOURCE

University Children’s Hospital Zurich (Universitäts-Kinderspital Zürich —  http://www.kispi.uzh.ch)

Other related articles

Retrieved from http://www.swisshealth.ch/en/patienten/spitaeler/Kispi.php

Retrieved from http://hospitals.webometrics.info/en/europe/switzerland%20

Retrieved from http://www.gruner.ch/en/projects/university-childrens-hospital-zurich

Retrieved from http://www.ebmt-swiss-ng.org/university-childrens-hospital-zurich.html

Other related articles were published in this Open Access Online Scientific Journal include the following: 

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Healthcare conglomeration to access Big Data and lower costs

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A New Standard in Health Care – Farrer Park Hospital, Singapore’s First Fully Integrated Healthcare/Hospitality Complex

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A Rich Tradition of Patient-Focused Care — Richmond University Medical Center, New York’s Leader in Health Care and Medical Education

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Risk Factor for Health Systems: High Turnover of Hospital CEOs and Visionary’s Role of Hospitals In 10 Years

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Nation’s Biobanks: Academic institutions, Research institutes and Hospitals – vary by Collections Size, Types of Specimens and Applications: Regulations are Needed

https://pharmaceuticalintelligence.com/2013/01/26/nations-biobanks-academic-institutions-research-institutes-and-hospitals-vary-by-collections-size-types-of-specimens-and-applications-regulations-are-needed/

 

 

 

 

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President Carter’s Status

Author: Larry H. Bernstein, MD, FCAP

 

 

Most Experts Not Surprised by Carter’s Status 

But early response does not mean ‘cure’

http://www.medpagetoday.com/HematologyOncology/SkinCancer/55076

 

http://clf1.medpagetoday.com/media/images/55xxx/55076.jpg

by Charles Bankhead
Staff Writer, MedPage Today

 

Former President Jimmy Carter’s announcement that he is free of metastatic melanoma surprised many people but, not most melanoma specialists contacted by MedPage Today.

With the evolution of modern radiation therapy techniques and targeted drugs, more patients with metastatic melanoma achieve complete and partial remissions, including remission of small brain metastases like the ones identified during the evaluation and initial treatment of Carter. However, the experts — none of whom have direct knowledge of Carter’s treatment or medical records — cautioned that early remission offers no assurance that the former president is out of the woods.

“If I had a patient of my own with four small brain mets undergoing [stereotactic radiation therapy], I would tell them that I fully expected the radiation to take care of those four lesions,” said Vernon K. Sondak, MD, of Moffitt Cancer Center in Tampa. “The fact that President Carter reports that it has done just that is not a surprise to me at all.

“I would also tell my patient that the focused radiation only treats the known cancer in the brain, and that if other small areas of cancer are present, they will likely eventually grow large enough to need radiation or other treatment as well, and that periodic brain scans will be required to monitor for this possibility.”

Carter also is being treated with the immune checkpoint inhibitor pembrolizumab (Keytruda), which is known to stimulate immune cells that then migrate to tumor sites to eradicate the lesions, noted Anna Pavlick, DO, of NYU Langone Medical Center in New York City.

“Melanoma is no longer a death sentence, and we are really changing what happens to patients,” said Pavlick. “It really is amazing.”

Carter’s melanoma story began to emerge in early August when he had surgery to remove what was described as “a small mass” from his liver. Following the surgery, Carter announced that his doctors had discovered four small melanoma lesions in his brain, confirming a suspicion the specialists had shared with him at the time of the surgery.

Carter subsequently underwent focused radiation therapy to eradicate the brain lesions and initiated a 12-week course of treatment with pembrolizumab. The radiation therapy-targeted therapy combination was a logical option for Carter, given observations that the PD-L1 inhibitor has synergy with radiation, noted Stergios Moschos, MD, of the University of North Carolina Lineberger Comprehensive Cancer Center at Chapel Hill.

“I have seen this in other patients with metastatic melanoma,” said Gary K. Schwartz, MD, of Columbia University Medical Center in New York City. “It is remarkable but absolutely possible within the realm of immunotherapy today.”

Although Carter’s announcement is undeniably good news, the optimism should be tempered by a long-term perspective, suggested Nagla Abdel Karim, MD, PhD, of the University of Cincinnati Medical Center.

“We do have similar stories; however, we would be careful to call it a ‘complete remission’ and ‘disease control’ and not a ‘cure,’ so far,” said Karim. “We would resume therapy and follow-up any autoimmune side effects. Most important is the quality of life, which he seems to enjoy, and we are very happy with that.”

Darrell S. Rigel, MD, also of NYU Langone Medical Center, represented the lone dissenter among specialists who responded to MedPage Today‘s request for comments.

“I’m happy for him, but it’s very unusual, especially in older men, who usually have a worse prognosis,” said Rigel. “He is on a new drug that may have a little more promise, but there is no definitive cure at this point.”

 

 

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Forced feeding of the geriatric patient

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

The New York Times of 11/24/2015 carried an Op-Ed “Stop Force-Feeding the Elderly”. The article is reminiscent of the experience of my Uncle Herman, in a nursing home at age 98.  He was not really incapable of taking care of himself, but he had lived in the same place the his recently deceased wife had been.  A nurse tried to place a feeding tube and he refused, and when she said he needed it, he smacked her down.  That was a year before he died.

In important issue that is not stated is that nutritional care is important in nursing homes, and there is very poor assessment of nutritional status of these patients.  It was many years ago that I was unable to provide the support for testing of transthyretin testing at a nursing home in New Haven, mainly because it was not in contract with Bridgeport Hospital.  However, I knew someone in another state who was formerly a representative of a major pharmaceutical company and she took a position at a nursing home.  She was thoroughly familiar with my publications on transthyretin and cachexia.  It is not only an issue with hospitalized patients who are hypermetabolic, mainly posttraumatic, postoperative, or burn patients, but is also seen in the geriatric patient unable to carry out the activities of daily living.

The NY Times article informs us that there is excessive forced feeding in nursing homes because they may have poorly prepared nursing and ancillary staff who are also not well paid.  It points out that tube feeding is often given to patients with dementia who should not even be offered such treatment.

The experience described is a viscous nutritional formula pumped into a feeding tube inserted into the stomach via nasopharyngeal passage.  The well trained pathologist is quite familiar with the epithelial erosion that occurs from tube placement into the esophagus.

The author, Haider Javed Warraich, describes an experience  as follows: “The nearest I ever came to experiencing what I might feel like was last winter when I came down with the sniffles and went to the clinic for a nasopharyngeal swab to rule out the flu. The swab inserted in my nose was perhaps a tenth the size of the smallest feeding tube, and I felt as if it were tearing all the way into my brain stem.”

Furthermore, even if food supplementation is required, a protein shake can be given orally, and if the oral route is not accessible, a small port of entry can be made for temporary use directly to the stomach.

The writer describes the incident of a demented, glassy eyed patient who stared at the ceiling. He had a chest tube draining fluid because of pneumonia.  The family requested that a feeding tube be placed.  The intern started the placement with care.  The patient spoke the first words he expressed in months:
“Kill me”.  This became a screaming : “killmekillme…”.

 

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Occupational Therapy

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

Definition of Occupational Therapy

Occupational therapy is a client-centred health profession concerned with promoting health and well being through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. Occupational therapists achieve this outcome by working with people and communities to enhance their ability to engage in the occupations they want to, need to, or are expected to do, or by modifying the occupation or the environment to better support their occupational engagement.(WFOT 2012)

Read the Statement on Occupational Therapy

In occupational therapy, occupations refer to the everyday activities that people do as individuals, in families and with communities to occupy time and bring meaning and purpose to life. Occupations include things people need to, want to and are expected to do.

Definition of Occupational Therapy Practice for the AOTA Model Practice Act

http://www.aota.org/-/media/Corporate/Files/Advocacy/State/Resources/PracticeAct/Model%20Definition%20of%20OT%20Practice%20%20Adopted%2041411.ashx

The practice of occupational therapy means the therapeutic use of occupations, including everyday life activities with individuals, groups, populations, or organizations to support participation, performance, and function in roles and situations in home, school, workplace, community, and other settings. Occupational therapy services are provided for habilitation, rehabilitation, and the promotion of health and wellness to those who have or are at risk for developing an illness, injury, disease, disorder, condition, impairment, disability, activity limitation, or participation restriction. Occupational therapy addresses the physical, cognitive, psychosocial, sensory-perceptual, and other aspects of performance in a variety of contexts and environments to support engagement in occupations that affect physical and mental health, well-being, and quality of life. The practice of occupational therapy includes:

A. Evaluation of factors affecting activities of daily living (ADL), instrumental activities of daily living (IADL), rest and sleep, education, work, play, leisure, and social participation, including:

1. Client factors, including body functions (such as neuromusculoskeletal, sensory-perceptual, visual, mental, cognitive, and pain factors) and body structures (such as cardiovascular, digestive, nervous, integumentary, genitourinary systems, and structures related to movement), values, beliefs, and spirituality.

2. Habits, routines, roles, rituals, and behavior patterns.

3. Physical and social environments, cultural, personal, temporal, and virtual contexts and activity demands that affect performance.

4. Performance skills, including motor and praxis, sensory-perceptual, emotional regulation, cognitive, communication and social skills.

B. Methods or approaches selected to direct the process of interventions such as:

1. Establishment, remediation, or restoration of a skill or ability that has not yet developed, is impaired, or is in decline.

2. Compensation, modification, or adaptation of activity or environment to enhance performance, or to prevent injuries, disorders, or other conditions.

3. Retention and enhancement of skills or abilities without which performance in everyday life activities would decline.

4. Promotion of health and wellness, including the use of self-management strategies, to enable or enhance performance in everyday life activities.

5. Prevention of barriers to performance and participation, including injury and disability prevention.

C. Interventions and procedures to promote or enhance safety and performance in activities of daily living (ADL), instrumental activities of daily living (IADL), rest and sleep, education, work, play, leisure, and social participation, including:

1. Therapeutic use of occupations, exercises, and activities.

2. Training in self-care, self-management, health management and maintenance, home management, community/work reintegration, and school activities and work performance.

3. Development, remediation, or compensation of neuromusculoskeletal, sensory-perceptual, visual, mental, and cognitive functions, pain tolerance and management, and behavioral skills.

4. Therapeutic use of self, including one’s personality, insights, perceptions, and judgments, as part of the therapeutic process.

5. Education and training of individuals, including family members, caregivers, groups, populations, and others.

6. Care coordination, case management, and transition services.

7. Consultative services to groups, programs, organizations, or communities.

8. Modification of environments (home, work, school, or community) and adaptation of processes, including the application of ergonomic principles.

9. Assessment, design, fabrication, application, fitting, and training in seating and positioning, assistive technology, adaptive devices, and orthotic devices, and training in the use of prosthetic devices.

10. Assessment, recommendation, and training in techniques to enhance functional mobility, including management of wheelchairs and other mobility devices.

11. Low vision rehabilitation.

12. Driver rehabilitation and community mobility.

13. Management of feeding, eating, and swallowing to enable eating and feeding performance.

14. Application of physical agent modalities, and use of a range of specific therapeutic procedures (such as wound care management; interventions to enhance sensory-perceptual, and cognitive processing; and manual therapy) to enhance performance skills.

15. Facilitating the occupational performance of groups, populations, or organizations through the modification of environments and the adaptation of processes.

Adopted by the Representative Assembly 4/14/11 (Agenda A13, Charge 18)

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Patients First

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

Office of Patient Experience

http://my.clevelandclinic.org/patients-visitors/patient-experience

 

Cleveland Clinic defines our patient experience as putting “Patients First”.

http://my.clevelandclinic.org/ccf/media/Images/Patient%20Experience/carousel/patients_first.jpg

 

Putting patients first requires more than world-class clinical care – it requires care that addresses every aspect of a patient’s encounter with Cleveland Clinic, including the patient’s physical comfort, as well as their educational, emotional, and spiritual needs. Our team of professionals serves as an advisory resource for critical initiatives across the Cleveland Clinic health system. In addition, we provide resources and data analytics; identify, support, and publish sustainable best practices; and collaborate with a variety of departments to ensure the consistent delivery of patient-centered care.

Cleveland Clinic was the first major academic medical center to make patient experience a strategic goal, appoint a Chief Experience Officer, and one of the first to establish an Office of Patient Experience.

 

Patient Experience Measurement

http://my.clevelandclinic.org/ccf/media/Images/Patient%20Experience/launchpads/programs-lp.jpg

How We Measure Patient Experience

All acute care hospitals throughout the United States participate in a patient survey process designed and regulated by the Centers for Medicare and Medicaid Services (CMS). This HCAHPS survey (Hospital Consumer Assessment of Healthcare Providers and Systems) measures patients’ perspectives of their hospital care.

Public results are available at hospitalcompare.hhs.gov. Eligible adult patients are surveyed after hospital discharge and results displayed represent four consecutive calendar quarters.

Due to a time lag of the published HCAHPS survey results, we believe it is important for you to see our most recent feedback. View our HCAHPS scores from the last public reported period as well as our recent performance.

HCAHPS Education and Data Coordination

The Intelligence Team in the Office of Patient Experience plays a vital role in coordinating survey data transmission between the survey vendor and the Cleveland Clinic system. Real-time survey results, complete with benchmark comparisons and performance indicators, are maintained on an internal web-based dashboard program available to all staff in leadership and management roles. The team also provides survey education, particularly for the CMS-required inpatient HCAHPS survey process, and works together with leadership to uncover feedback trends and help prioritize experience improvement efforts.

 

Patient Experience: Empathy & Innovation Summit

Patient Experience: A Key Differentiator

Patient experience has emerged as a dynamic issue for healthcare executives, physicians, nursing executives and industry leaders. No provider can afford to offer anything less than the best clinical, physical and emotional experience to patients and families. As patients become savvier, they judge healthcare providers not only on clinical outcomes, but also on their ability to be compassionate and deliver excellent, patient-centered care.

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Factors in Patient Experience

Larry H. Bernstein, MD, FCAP, Curator

LPBI

Defining Patient Experience

http://www.theberylinstitute.org/?page=definingpatientexp

“The definition will allow me as a driver in improving the patient experience at our organization to include those key elements (interactions, current culture, perceptions, across the continuum of care) in our discussions to encourage a more integrated, quality experience that exceeds the expectations of each patient.”

To develop the Institute’s definition of patient experience, we formed a work group of patient experience leaders from a cross-section of healthcare organizations. The group shared perspectives, insights and backgrounds on what patient experience means to them and collaboratively created this definition. We believe it provides a terrific starting point for the conversation around this important issue.

Critical to the understanding and application of this definition is a broader explanation of its key elements:

Interactions Culture Perceptions Continuum of Care
The orchestrated touch-points of people, processes, policies, communications, actions, and environment The vision, values, people (at all levels and in all parts of the organization) and community What is recognized, understood and remembered by patients and support people. Perceptions vary based on individual experiences such as beliefs, values, cultural background, etc. Before, during and after the delivery of care

The History of Patient Experience

Hear perspectives from two leading Patient Experience thought leaders. Wendy Leebov, Partner at Language of Caring, and Mary Malone, President of Malone Advisory Services, discuss the history of patient experience and its growth in the healthcare industry. Perfect as tools to share with growing patient experience professionals or to reenergize efforts for experienced leaders, learn about the many influences that led to the existing patient experience movement and how we all have an impact in this emerging field.

Learn more about the history of patient experience in the PX Body of Knowledge History course where you will grasp the core foundation of patient experience and review the evolving role of patient experience in healthcare today.

https://youtu.be/_kwZ-xeOj8Y

Defining Patient Experience

Authors: Jason A. Wolf PhD, Victoria Niederhauser DrPH, RN, Dianne Marshburn PhD, RN, NE-BC, Sherri L. LaVela PhD, MPH, MBA
Publication: Patient Experience Journal

In recent years, perceptions of performance and quality of healthcare organizations have begun to move beyond examining the provision of excellent clinical care, alone, and to consider and embrace the patient experience as an important indicator. There is a need to determine the extent to which clear and formal definitions exist, have common overarching themes, and/or have unique, but important constructs that should be considered more widely. In this article, we provide a 14-year synthesis of existing literature and other sources (2000-2014) that have been used to define patient experience. A total of 18 sources (articles or organizational websites) were identified that provided a tangible, explicit definition of patient experience. A narrative synthesis was undertaken to categorize literature (and other sources) according to constructs of the definitions provided. The objectives of the synthesis were to: (1) identify the key elements, constructs, and themes that were commonly and frequently cited in existing definitions of ‘patient experience,’ (2) summarize these findings into what might be considered a common shared definition, and (3) identify important constructs that may be missing from and may enhance existing definition(s). The overarching premise was to identify and promote a working definition of patient experience that is applicable and practical for research, quality improvement efforts, and general clinical practice. Our findings identified several concepts and recommendations to consider with regard to the definition of patient experience. First, the patient experience reflects occurrences and events that happen independently and collectively across the continuum of care. Also, it is important to move beyond results from surveys, for example those that specifically capture concepts such as ‘patient satisfaction,’ because patient experience is more than satisfaction alone. Embedded within patient experience is a focus on individualized care and tailoring of services to meet patient needs and engage them as partners in their care. Next, the patient experience is strongly tied to patients’ expectations and whether they were positively realized (beyond clinical outcomes or health status). Finally, the patient experience is integrally tied to the principles and practice of patient- and family- centered care. As patient experience continues to emerge as an important focus area across healthcare globally, the need for a standard consistent definition becomes even more evident, making it critical to ensure patient experience remains a viable, respected, and highly embraced part of the healthcare conversation.

Patient Experience Journal 2014;  1:(1), Article 3.
Available at: http://pxjournal.org/journal/vol1/iss1/3

In practice and research the concept of patient experience has had varied uses and is often discussed with little more explanation than the term itself. Although very little has been published about the complexities with regard to defining patient experience, the 2009 HealthLeaders Media Patient Experience Leadership Survey 3 discovered that when it comes to defining patient experience, there are widely divergent views within the healthcare industry. They found that 35% of respondents agreed that patient experience equals “patient-centered care,” 29% agreed it was “an orchestrated set of activities that is meaningfully customized for each patient,” and 23% said it involved “providing excellent customer service.” The remaining responses reflected patient experience meant, “creating a healing environment,” being “consistent with what’s measured by HCAHPS,” or “other” than the options provided in the survey. In asking the question, “Does your organization have a formal definition of patient experience?” of healthcare organizations in its recent Patient Experience Benchmarking Study, The Beryl Institute discovered that on average 45% of US-based hospitals1 and 35% of non US-based healthcare organizations reported having a formal definition. The question this raises is that as patient experience is identified as a priority item, would healthcare efforts be best served by having a formally accepted definition of patient experience?

The efforts that shaped The Beryl Institute’s definition came from the voices of practice and a review of current research and use in 2010. A workgroup of healthcare leaders from a variety of patient experience roles identified the key elements shaping their work in the patient experience. Within individual organizations, inquiries were made of peers and patients to identify key themes and these larger concepts were pulled together in collective data that was aligned around main themes. The four themes that emerged were personal interactions, organization culture, patient and family perceptions, and across the care continuum. From the themes, a definition was created and then validated through the broader Institute community for further feedback and refinement. The definition is currently being used (with or without adaptations) by a number of healthcare facilities globally as their own definition of patient experience. However, there is much ground yet to be covered in moving towards alignment around a clear and shared definition of patient experience. The purpose of this article was to provide a 14-year synthesis of existing literature and other sources that have been used to define patient experience. Given the breadth and depth of information, we aimed to examine key concepts and compare/contrast multiple definitions, and ultimately to recommend a working definition that we feel can be used to across healthcare settings to capture the patient experience.

Need for Definition We identified 18 sources (websites or articles) that explicitly provide a definition for the patient experience (Table 1). The latest data from both the most recent HeathLeader’s survey and The Beryl Institute’s State of Patient Experience benchmarking research identified patient experience as a top priority; however they also identify there is a divergent nature of patient experience and need for a clear and concise definition. In the article “What is the Patient Experience”? from the Gallup Business Journal, the authors’ suggest that the ideal patient experience is created by meeting four basic emotional needs: confidence, integrity, pride and passion, ultimately asserting that experience is about engaging patients. The author offers in closing, “Engaged healthcare is better healthcare, for everyone. And that’s the best definition of the patient experience”.6

Continuum of Care Several authors argue that the patient experience is not just one encounter, but spans over time and includes many touch points. In a recent publication, Deloitte LLP’s Health Sciences Practice7 contends that organizations need to focus on the patient experience to gain and maintain a competitive advantage. They define the patient experience as much broader than the care itself, describing specific touch points or times when there is interaction with the organization and the patient. Their definition, “The Patient Experience refers to the quality and value of all of the interactions—direct and indirect, clinical and nonclinical—spanning the entire duration of the patient/provider relationship” represents a continuum of interactions. In a recent article, although Stempniak8 does not define patient experience directly, he does offer two quotes that provide some insight. The first from Pat Ryan, CEO of Press Ganey who said, “Let’s look at the patient experience in total as reducing suffering and reducing anxiety… across the entire continuum of care, from the first phone call to the patient’s being discharged.” The second is a statement from Dr. Jim Merlino, Chief Experience Officer at the Cleveland Clinic who admits, the biggest challenge in this effort is figuring out where to start, and defining exactly what the “patient experience” means. Pemberton & Richardson9 provide an overview of a development process of a patient experience vision, told through a story and framed by a series of six active steps a patient goes through during an episode of care, which included: reputation, arrival, contract, stay, treatment and after stay. While there is no direct statement of how they defined the patient experience, they identified the importance of culture and staff engagement in driving an effective patient experience effort.

Beyond Survey Results Several articles argue that the patient experience should be defined more broadly than just using the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey domains.

Aligned with Patient-Centered Care Principles Other definitions focus on patient-centered care principles. Weiss and Tyink13 discuss the opportunity to provide the ideal patient experience through creating a patient-centric culture. The components of a patientcentric culture encompass competent, high-quality care, personalized care, timely responses, care coordination, and are reliable and responsive. They suggest that the patient experience is about a brand experience and is driven by what happens at the point of contact between the patient, the practice, and the provider.

Focus on Expectations

Focus on Individualized Care

More than Satisfaction

As our review of literature and sources showed, there is an absence of a commonly used definition around patient experience in healthcare. While there has been increasing numbers of articles, research and writing on the subject in recent years, little has been seen in the way of coalescing around an accepted statement. Much of this is due to the reality that in all but a few cases a truly concise, applicable and replicable definition was not offered. Other influences may be the competing interests that influence the day-today operations of healthcare overall.

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