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Posts Tagged ‘drivers of patient experience’


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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Real Time Coverage @BIOConvention #BIO2019: Understanding the Voices of Patients: Unique Perspectives on Healthcare; June 4 11:00 AM

Reporter: Stephen J. Williams, PhD @StephenJWillia2

 

Description

The role of the patient has evolved dramatically over the past decade. Not only are patients increasingly more involved in their healthcare decision making, they are also passionate advocates who work tirelessly to advance drug development research and development and secure a public policy environment that is patient-centric. Join a discussion with patient advocates as they discuss their journeys to diagnosis and their viewpoints on our healthcare system. They will share their perspectives on what it means to be a patient and how they are advocating in their own unique ways to achieve a common goal: bringing new treatments to patients.

Speakers
Christopher Anselmo: affected by MS but did not understand why he should be involved in a study at the time or share your story but he saw others who benefited from both of these and now is fervent patient advocate. Each patient is worth their weight in gold as needed for other patient support.  The why needs to be asked of oneself before go out to other patients or into new trials. Might not see through to end if don’t have that discussion of why doing this.
Eve Bukowski:  she had stomach aches, went to hospital, and diagnosed with constipation, but had stage III colon cancer.  She was campaigning for Hillary Clinton but then started to campaign for her life.  She wound up having multiple therapies and even many I/O trials.  Fighting cancer is a mental challenge.   She has been fighting for eleven years but has an amazing strength and will.
Emily Kramer: cystic fibrosis patient.  Advocates for research as she has a mutant allele (nonsense mut) that is not targeted by the current new therapy against known mutants of CFTR.  So started Emily’s Entourage for this orphan of an orphan disease.  Funded $4 million in grants and helped develop a new startup and get early seed funding.  Noticed that the infrastructure to get these drugs to market was broken and also is investing to shore up these breaks in drug pipeline infrastructure for orphan diseases. For progressive diseases she would like drug developers to shift the timelines or speed with which they get to take a chance and try that new possibility. As a patient advocacy org, they want to partner every step of the way with biotech/pharma, they understand co’s and stakeholders can only do so much but let’s break out of convention.
Julie: many patient advocacy groups go person to person and make a support network.

Please follow LIVE on TWITTER using the following @ handles and # hashtags:

@Handles

@pharma_BI

@AVIVA1950

@BIOConvention

# Hashtags

#BIO2019 (official meeting hashtag)

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Drivers of Patient Experience

Larry H. Bernstein, MD, FCAP, Curator

LPBI

 

Understanding the Drivers of the Patient Experience

Many hospitals, including the Cleveland Clinic, are implementing a variety of strategies to improve the patient experience —an issue that’s rapidly becoming a top priority in health care. The Accountable Care Act now links performance related to patient-experience metrics to reimbursement. For the first time, the pay of hospitals and eventually individual providers will be partly based on how they are rated by patients. Few disagree on the importance and the need to be more patient centric, but what exactly is the “patient experience”?

A 2012 industry survey asked top hospital leaders (CEOs, COOs, and others) what was necessary to improve the patient experience. The top six recommendations included: new facilities, private rooms, food on demand, bedside-interactive computers, unrestricted visiting hours, and more quiet time so patients could rest. There was one problem with them: They were not based on a systematic examination of what most patients really wanted. In other words, hospital executives wanted to focus on what they felt were important drivers of the patient experience but didn’t know for sure.

To truly improve the patient experience, it is important to get the patient’s perspective. National trends in data on the U.S. patient experience suggest that some groups of patients regularly score their experiences higher than others.

For example, surgical patients tend to give hospitals higher ratings than patients admitted with chronic medical conditions. Surgical patients may view or interpret their experience differently. Consider a patient who underwent surgery for a broken leg. If the patient receives high-quality health care (her leg was fixed, her questions were answered, she feels better, and she understood what was being done to her), she may not care whether she believed her providers were treating her with courtesy or respect or showed her compassion.

Now consider a patient who consistently uses the health care system — someone with multiple, chronic medical conditions that remain incurable and are only treatable from a maintenance standpoint. If he doesn’t feel that his caregivers are compassionate, that may heavily influence his overall perception of the experience. Since his relationship with health care givers is more prolonged (or permanent), he may need more of the “human side” of caring.

Why is it important for caregivers to know the drivers of patient experience? First, not being clear about the drivers can often be a significant barrier to launching a patient-experience initiative. Second, knowing the drivers helps leaders identify the most effective ways to achieve quick victories.  Third, the economics of the levers is quite different. Improving some of these dimensions (such as providing private rooms) would be cost prohibitive for most hospitals. Others (such as improving communication between patients and caregivers) could reduce the overall cost of providing health care and also improve medical outcomes.

Faced with the task of understanding the drivers of patient experience, health care organizations have taken — and can take — multiple approaches to discerning the drivers of patient experience. Below, we review briefly some of the innovative approaches to better understand patient needs that have been tried in various organizations, including the UCLA Medical Center in Los Angeles, Methodist Hospital in Houston, St. Joseph’s Hospital in Phoenix, and the Cleveland Clinic.

Create patient advisory councils. A very simple but effective approach in many contexts is to identify a group of patients that can act as the customers’ “voice” within the organizations. It is easy for an organization to lose touch with its customers’ evolving needs.

Today, Voice of the Patient Advisory Councils are used at the Cleveland Clinic to ensure that the organization does not lose track of patients’ needs. Councils have assisted with redesigning waiting rooms, providing advice on improving the admission guide, and helping managers better understand communication needs in the hospital.

Dig deeper into patients’ experiences. Hospitals can use data from the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) — the patient-satisfaction surveys conducted for the Centers for Medicare and Medicaid Services — to compare how their performance compares with that of other U.S. hospitals. Hospitals can leverage the HCAHPS data better by both digging deeper into the data and paying attention to anecdotal comments and complaints. This allows hospitals to understand not only how their patients feel about their experience but also why they felt the way they did.

Using such a process, the Cleveland Clinic found that patients were more satisfied when they had caregivers who smiled more. But when the Clinic dug deeper, it discovered that patients were not concerned about whether about their caregivers had happy expressions per se; rather, they were concerned when doctors’ and nurses’ had stern expressions because they interpreted them to mean that caregivers were concealing problems from them. This caused anxiety and, as a result, adversely affected patient satisfaction.

Have leaders make regular rounds. At UCLA Medical Center, as well as other hospitals across the country, senior leaders (both clinical and non-clinical) make a habit of wandering throughout the hospital and talking to patients, their families, and caregivers (including physicians, nurses, food-service workers who deliver the meals, and environmental-service workers who clean the rooms. These rounds need to be done on a regular basis and at least once a month. Such direct contact provides leaders with a firsthand understanding of patient needs.

This is important for two reasons. One, it is easy for leaders — even clinical leaders in hospitals who have direct patient contact in the normal course of performing their jobs — to lose touch with patient needs. Two, leadership rounds are an important means of exposing non-medical leaders in finance, operations, and other areas of the hospitals to the front lines of patient care. Finally, by regularly seeing and hearing with their own eyes and ears what’s happening on the front lines of patient care, leaders can help identify problems and opportunities for improvement.
Tell stories. There is nothing more moving than the incredible stories that patients relay about their experiences in the hospital. Sharing these stories — both good and bad — is important to employees. The good stories highlight the importance of their roles and demonstrate the incredible gratitude that patients have for their work. The bad stories often help explain the negative feelings about the hospital that some patients have. (At the Methodist Hospital in Houston, CEO Marc Bloom opens every meeting of the board of trustees by relaying a patient’s account of his or her stay. Sometimes it was good and sometimes bad. At the end, he reminds everyone that “this is what we do.”)

We are big fans of analyzing data to understand and improve patient experience. However, presentations that rely on excessive amounts of data can be dry and uninspiring. Conveying the same message through a well-told story can be powerful and inspirational. Also, storytelling can help strengthen caregivers’ emotional bonds with the organization and their jobs, which, in turn, can make it easier to engage employees in the organization’s mission to deliver world-class care to patients.

Leaders of health care organizations in recent years have focused primarily on delivering superior medical outcomes at lower costs. In addition, they also need to focus on improving the patient experience. A poor experience compromises a hospital’s reputation among patients and other physicians and adversely affects employees’ engagement levels. Moreover, with the changes in the reimbursement policies in many countries, it can have a negative impact on a hospital’s economics. But improving the patient experience will be hard to do without a better understanding of what patients really want. We hope others will offer comments and share what they’ve learned from their own efforts to understand what drives patient satisfaction.

Follow the Leading Health Care Innovation insight center on Twitter @HBRhealth. E-mail us at healtheditors@hbr.org, and sign up to receive updates here.

 

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