patient engagement

Jessie Optimized
When I heard that Jessie Gruman had died, that her powerful voice on behalf of patients had been stilled and gone silent years too soon, I thought of Phillipe Petite, the high-wire artist who famously tread a cable strung between the two World Trade Center buildings back in 1974.

Jessie’s balancing act did not take place on so visible a stage, but her death-defying dance equally amazed those who knew, worked with, respected and loved her.

On the one side, she was persistently pulled down by cancer. There was Hodgkin’s lymphoma in 1973 when she was just 20, setting the stage for repercussions of treatment that would dog her ever after: cervical cancer eight years later; colon cancer in 2004; and a diagnosis of stomach cancer in 2011 that returned after a too-brief hiatus. There was also pericarditis, a dangerous heart condition.

Counterbalancing that burden was the uplift of a woman whose “bouts” with cancer shaped, but never defined her. She was a social psychologist who was an early part of work on the chronic care model; the founder of a policy and research center dedicated to empowering patients in health care and in health; a prolific writer and author of a landmark book on what to do with a diagnosis of serious disease; and for many, a personal inspiration.

On the morning of July 14, Jessie finally fell off the tightrope, as we all must eventually do, dying at home. She was 60 years old.

You can’t really understand the outpouring of affection, appreciation and aching loss Jessie inspired just by browsing her impressive bio. She was sharp and funny, with wry asides directed at any pretension exhibited by allies or adversaries alike.

However, Jessie did far more than dish and dis. She was a superlative builder; of an organization, yes, but more importantly, of a body of work that prompted government policymakers and uncounted health care organizations to pay greater attention to the unmet needs of patients. She also reached out directly to fellow patients to help. In all these activities, she married intellectual rigor and careful attention to evidence – techie trendiness, for example, did not impress her ­– with emotional honesty. Jessie spoke what often goes unspoken, candidly acknowledging how horribly scary and alone it feels to be seriously ill.

As she wrote in her book, AfterShock: What to Do When the Doctor Gives You – or Someone You Love –a Devastating Diagnosis:

Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map and I desperately want to find my way home.

Jessie told one interviewer: “I want people to know how to take care of themselves and pay attention to the urgency of their situation even when their heart is broken.” Later, she repeated that theme in an article for Health Affairs that called for policies to support patients and their families in their time of distress. Continue reading “Jessie Gruman: Tribute to a Tightrope Walker”

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Screen Shot 2014-06-19 at 11.04.40 AMACO, MSSP, BPCI, HIE, CQM, P4P, PCMH, yadda, yadda, yadda … The litany of acronyms describing changing P&D (excuse me, payment and delivery) models can sometimes numb the senses. But it would be unwise to allow the latest healthcare jargon to lull you into an AIC—an acronym-induced coma, for which I believe there is a new ICD-10 code—because the world might look a lot different when you snap out of it.

Little debate exists that the U.S. healthcare system needs to transition from turnstile medicine to value-based care, from a predominantly fee-for-service payment model to one that emphasizes accountability for population health. This, of course, is not a novel concept, so the biggest challenges relate to how we get there. As many skeptics have argued, the same dynamics have existed before – unsustainable healthcare costs and too little value for our money – so the Talmudic question arises: Why is this era different from all other eras?

  1. EHRs have changed the playing field completely
  2. Reporting of comparative performance is now embedded into the delivery system
  3. We understand the centrality of patient engagement
  4. Today’s incentives reward greater accountability and value

There are some fundamental differences compared to, for example, the environment that existed in the 1990s when some experts believed managed care would change the underlying cost structure of the health care system. A majority of providers now have implemented electronic health records (EHRs) and an increasing number are – or soon will be as a result of Stage 2 “Meaningful Use” – able to exchange clinical data across network and vendor boundaries. The expectation that quality measurement will be used for holding providers accountable has taken root and most health care organizations regularly submit standardized performance data to public and private payers, purchasers and independent accrediting bodies. Providers increasingly recognize that their success in population health management relates to their ability to effectively engage with their patients in collaborative relationships.

Continue reading “Be Prepared: Beyond the Alphabet Soup of Value-Based Care”

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flying cadeuciiWould allowing patients to read their mental health notes provide more benefits than risks?

In a recent article in JAMA  my colleagues and I argue that it would.  While transparent  medical records are gaining favor in primary care settings throughout the country through the OpenNotes initiative, there has been reluctance to allow patients to see what their treaters say about their mental health issues. While this reluctance is understandable and deserves careful consideration, we suggest that several benefits could result from patients reading their mental health notes.

First of all, accuracy would be enhanced  by allowing patients to cross-check what their clinicians say about their symptoms, medication doses, and so forth. Second, allowing patients to review assessments and treatment decisions privately might help to promote a richer dialogue between patient and clinician. Third, patients might learn that their clinician sees them more as a complete person, rather than as a collection of symptoms.

Many patients silently fear that their treater  “will think I’m crazy/whining/lazy/boring”; seeing in print that the treater does not see them  that way—and in fact recognizes and documents their strengths—can be an enormous relief and might therefore enhance the therapeutic alliance.

Clinicians have their own worries about transparent mental health notes that must be considered. Will patients feel objectified by the medical language commonly used in documentation? Will they break off treatment if they don’t like what they read? Will too much time be spent wrangling over details of what has been documented? Will vulnerable patients be psychologically harmed by reading their notes? Although our article briefly addresses these issues, only a trial of transparent mental health notes will provide the data needed to assess them.

Such a trial has just begun at the Beth Israel Deaconess Medical Center in Boston. Culminating many months of careful planning by my colleagues in the ambulatory psychiatry clinic, the Social Work department, as well as the OpenNotes team, we began a pilot project of transparent notes in our psychiatry clinic on March 1. So far almost all clinicians have chosen to participate in the project, and have identified 10% of their caseloads to be included. It’s too early to gauge results yet, but we hope to more fully evaluate the effects of making mental health notes fully transparent to our patients.

Michael W. Kahn, MD is an assistant professor of psychiatry at Harvard Medical School and Harvard Medical Faculty Physician at Beth Israel Deaconess Medical Center (BIDMC). 

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A few weeks ago, I went for the first time to Stanford’s Medicine X conference. It’s billed as a conference that brings a “broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine.”

Well, I went, I saw, and I even briefly presented (in a workshop on using patient-generated data).

And I am now writing to tell you about the most important innovations that I learned about at Medicine X (MedX).

They were not the new digital health technologies, even though we heard about many interesting new tools, systems, and apps at the conference, and I do believe that leveraging technology will result in remarkable changes in healthcare.

Nor were they related to social media, ehealth, or telehealth, even though all of these are rapidly growing and evolving, and will surely play important roles in the healthcare landscape of the future.

No. The most remarkable innovations at MedX related to the conference itself, which was unlike any other academic conference I’ve been to. Specifically, the most important innovations were:

  • Patients present to tell their stories, both on stage and in more casual conversational settings such as meals.
  • Patient participation in brainstorming healthcare solutions and in presenting new technologies. MedX also has an ePatient Advisors group to help with the overall conference planning.

These innovations, along with frequent use of storytelling techniques, video, and music, packed a powerful punch. It all kept me feeling engaged and inspired during the event, and left me wishing that more academic conferences were like this.

These innovations point the way to much better academic conferences. Here’s why:

The  power of patient presence

I wasn’t surprised to see lots of patients at Medicine X, because I knew that the conference has an e-patient scholars program, and that many patients would be presenting. I also knew that the director of MedX, Dr. Larry Chu, is a member of the Society of Participatory Medicine. (Disclosure: I’ve been a member of SPM since last December.)

I was, on the other hand, surprised by how powerful it was to have patients on stage telling their stories.

How could it make such a difference? I am, after all, a practicing physician who spends a lot of time thinking about the healthcare experience of older adults and their caregivers.

But it did make a difference. I found myself feeling more empathetic, and focused on the patient and family perspective. And I felt more inspired to do better as a physician and as a healthcare problem-solver.

In short, having patients tell their stories helped me engage with the conference presentations in a more attentive and meaningful way.

Now, some will surely be tempted to wave this off as a gauzy touchy-feely experience that is peculiar to the fruit-cakes of the Bay Area; a nice conference touch that isn’t materially important to the purpose of an academic conference.

Continue reading “* Patients Not Included”

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Levels of Empathy for the User (i.e. the Patient) for Designers compared with Doctors.

Joyce Lee, MD is a pediatrician, diabetes specialist, and Associate Professor at the University of Michigan.   She blogs about design and healthcare at joycelee.tumblr.com.

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Thanks to the technologic allure of iPhones replacing stethoscopesapps substituting for doctors and electronic information substituting for having to actually talk to patients, this thoroughly modern correspondent is all about medical-social media.

Think Facebook for the flu.  Twitter for tinnitus. Egads, listen to the typical consultant, pundit or futurist and it’s easy to believe that we’re on the verge of a silicon-based health care revolution.

But then reality intrudes and some skeptic somewhere always asks about the bang for the buck, the juice for the squeeze, the return for the investment. It’s a good question.

For something of an answer, consider the results appearing in a recently published randomized clinical trial by researchers at UCLA. Over a 4 month period, “at risk persons” were recruited for a clinical research trial with on-line ads (Facebook banners, Craigslist, for example) as well as announcements in community settings and venues.  Once subjects met the inclusion criteria and had a unique Facebook account, they were randomly assigned to one of two treatment arms.

One treatment arm used a closed Facebook group to coach persons about their at risk condition.  The other treatment arm similarly used Facebook to coach persons about general health improvement.  Lay “Peer Leaders,” who were given a three hour training session on “epidemiology of the condition or general health subjects and ways of using Facebook to discuss health and stigmatizing topics,” were assigned to lead the groups.

Peer Leaders attempted to reach out to their assigned group persons with messaging, chats and wall posts.  Once the link was established, the relationship in the intervention group included communication about prevention and treatment of the condition. At the end of 1, 2 and three months of the study, participants completed a variety of surveys.

Results?

57 individuals were in the control general health group and 55 were in the condition coaching group.  According to the surveys, intervention patients were ultimately statistically significantly more likely to agree to condition testing (44%) than the control patients (20%).  Because there were few participants, the modest decrease in actual tests or risk behaviors were not statistically meaningful.

This correspondent’s take:

While this was a small study, this is the first time that I have seen reasonable proof that social media by itself can move the behavior needle.  On the other hand, this did not result in a patient engagement stampede toward better care or hard clinical outcomes.  A majority of participants (56%) did not appear to benefit.  Nonetheless, the results do support the inclusion of Facebook-style closed group social media in the suite of population health management services.

Continue reading “Can Social Media Really Influence Health Behaviors? A Small Clinical Trial Argues The Answer Is Yes.”

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What is patient engagement?

Everyone agrees that it’s a good thing, and that we healthcare providers should be fostering it.

How to do so, however, depends on just what you believe patient engagement means.

As Dan Munro recently pointed out, the term “patient engagement” is a hot buzz phrase, and – in the best tradition of such phrases – it’s amorphous enough and appealing enough to mean…just about anything.

Provided that it that makes us feel good about healthcare, of course. Better yet, provided that it casts our favorite healthcare approaches in a favorable light. (Rob Lamberts nicely summarizes some angles of the term here.)

I actually rather liked Munro’s post, titled “Patient engagement: Blockbuster Drug or Snake Oil?” until he got to this part: “We now have some very real metrics around what constitutes real patient engagement and Leonard highlighted two impressive examples.” He goes on to point to two studies of care coordination for chronic illness — one at Kaiser and the other at the VA – and summarizes some key improvements in outcomes.

At Kaiser, they included things like decreased mortality rates and fewer emergencies, as well as improved cholesterol screenings and more people meeting cholesterol goals. With the VA’s Telehealth program, hospital days were reduced and patient satisfaction was 86%. (BTW, I had a VA primary care clinic from 2006-2010, and several of my patients were in Telehealth.)

These are indeed nice results. Still, somehow they didn’t impress me as constituting “real patient engagement.” They seemed more like “real population health management, facilitated by teams, care coordination, communication infrastructure, and organized protocols.”

Shouldn’t real patient engagement mean more than this?

Defining patient engagement

Here’s my current take:

Supporting patient engagement means fostering a fruitful collaboration in which patients and clinicians work together to help the patient progress towards mutually agreed-upon health goals.

Continue reading “Patient Engagement: On Metrics and Meaning”

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Why aren’t people in hospitals more attentive to the needs of patients?

In a recent post, Dr. Ashish Jha raises this issue as he relates his own story of coming to an ED with a very painful dislocated shoulder. Unsurprisingly, prompt treatment of his pain was deferred while staff diligently completed registration, sent him for an xray, and waited for a physician to see him.

On the bike path where Jha took his initial tumble, people went out of their way to respond to his injury with attention and concern. But as he lay moaning on a gurney in the hospital corridors, waiting for an xray and not yet treated for pain, people avoided his eyes and even walked by a little faster.

What gives? Why aren’t people in the hospital more empathetic and attentive? Is this a “wonderful people, bad system” issue?

In reflecting on his experience, Jha remarks that people seem to leave their humanity at the door when they arrive at the hospital for work, and posits that we get desensitized to suffering. He notes that some workers were able to “break out of that trap,” and responded to him more empathetically when he directly solicited their help and attention.

“It is the job of healthcare leaders to create a culture where we retain our humanity despite the constant exposure to patients who are suffering,” writes Jha.

Culture change is necessary but not sufficient

Culture is important. Yes I’ll admit that I’m usually a bit skeptical when I hear of a plan to tackle a problem through culture change. In my own experience, this has consisted of leaders trying to “create culture” by describing to front-line staff  what they should be doing, and repeatedly exhorting them to do it. (And maybe giving out gold stars to those who do it.)

This, of course, is never enough. Talking the talk does not mean people start to walk the walk, especially if the walk involves a slog uphill rather than an easier stroll down a path of lesser resistance.

If we – whether healthcare leaders or  just concerned citizens who want to see healthcare improve – really want healthcare workers to demonstrate more compassion and empathy while on the job, then here is what we need to do:

  1. We should take seriously the task of understanding what might be interfering with this compassion and engagement. This means not only studying workflow, but also the behavioral psychology of individuals as well as groups.
  2. We should then be serious about creating the conditions that would allow regular human beings to reliably produce the desired behaviors.

Why it can be hard to help people in the hospital

What interferes with showing compassion and engagement? In reading Jha’s piece, I reflected on my own hospital days. Here are the obstacles that I remember, and the impact on me.

Continue reading “Creating Conditions for Humanity in Hospitals”

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While in the care of a nurse, patients have a champion: a health care professional working to assure timely tests, procedures, and rehabilitative activities that foster better and faster recovery.  Prior to discharge from a health facility, it is often the nurse who assesses a patient’s self-care ability (or access to home caregivers) to provide the type of treatments and medications needed to prevent relapse or even costly return to a hospital.

Responsibility for optimal recovery is of course shared by all health team members, but the unique position of nurses at the patient’s bedside (literally and metaphorically) gives us many avenues to influence care and cure.

Though nurses already play a central role in cost containment, care quality, and patient safety, current trends in nursing education have us poised for even greater contributions. That’s because good baccalaureate and graduate programs in nursing increasingly incorporate quality improvement in care settings. Through attention to ‘microsystem’ processes, we work toward better outcomes not only for individuals but also for health systems as a whole. Nursing prepares leaders, administrators, and researchers who can improve care processes and related analytics around outcomes and cost.

The coming enactment of reforms included in the Affordable Care Act will increase the opportunities for nurses to make both individuals and care systems as healthy as they can possibly be. Patient communication, preventive care, and navigation across the vast medical landscape are well-established foci in the curriculum at major U.S. nursing schools. These areas of expertise could not be more essential now that new insurance options and Medicaid expansion are bringing millions of individuals into a national primary care system already taxed by provider shortages.

Nurse navigators and transitional care nurses are stepping up to central coordinating roles within Accountable Care Organizations—the model wherein participating health care providers are collectively responsible for their enrollees’ care, and also can share savings resulting from efficiency and improvements in that care.

Nursing as a profession actively engages in leading efforts to improve patient care and reduce costs; this is integral to our professional values, knowledge base, and skills. We have earned the trust of Americans (we’re voted most ethical and honest in Gallup polls), and will use that trust, along with our health promotion expertise, to communicate with patients about the best prevention, timely care, and most efficient ways to get needed help as they navigate together through America’s evolving system of care.

Kathleen Potempa, PhD, RN, FAAN, is the Dean of the University of Michigan School of Nursing and a national leader in health promotion, nursing education, and research. Dr. Potempa is the immediate past president of the American Associate of Colleges of Nursing and recently concluded a four-year term on the NIH’s National Institute of Nursing Research Council.

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The Wall Street Journal recently contacted me regarding an upcoming article on Sedasys, the new gadget that is supposed to be able to infuse propofol by computer while monitoring vital signs.

If you’ve read anything I’ve written previously, you’ll know that I am NOT a big proponent of technology as a means of ”improving” patient care. To me, the more technology you put between the patient and the caregiver, the less medicine you’re practicing, and the more data-entry and computer programming you’re doing.

Sedasys is designed specifically to administer propofol.  Propofol is a milk-like substance that produces a range of effects from sedation to general anesthesia.  For sedation you just use less,  for general anesthesia you use more.  Its very quick onset and very quick recovery make it great for outpatient sedation.  It has to be given in a continuous drip because its effect goes away so fast.  GI docs love it because its so effective.  I suspect they also love it because propofol comes with an anesthesiologist to give it.

The only problem is the one Michael Jackson encountered: it has this pesky side effect of causing you to stop breathing.  And you can’t tell by looking at a person how much will sedate them and how much will make them stop breathing.

A little old lady with a million health problems might sedate at, say, 40 mg and stop breathing at 60 mg, while an 19-year-old could probably take 150 mg and still be fighting you.  It’s not necessarily weight-based.

Continue reading “Why a New Healthcare Technology Designed to Cut Costs and Increase Efficiency Probably Won’t Put Anesthesiologists Out of Work”

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