What’s Engagement Now? Experts Discuss Emerging Challenges

Sarah Greene
May 9th, 2012

This interview with Sarah Greene is the ninth in a series of brief chats between CFAH president and founder, Jessie Gruman, and health care experts—among them our CFAH Board of Trustees—who have devoted their careers to helping people find good health care and make the most of it.

Sarah Greene is a publishing entrepreneur and soil microbiologist with a deep interest in patients’ participation in their care – and particularly in the research process.  She is the co-director of Cancer Commons, a nonprofit in Palo Alto, CA that is developing a new approach to translational cancer research that puts the patient at the front of the research process.

Extreme Openness: Sparking Progress through Patients, Researchers & Clinicians

 

Gruman: Building communities of engaged stakeholders is a theme that runs throughout your career.  Tell me about the different ways you have worked on this.

Sarah Greene:  I discovered somewhat by accident – early in my career — that science makes faster progress and produces better results if more people with a range of different expertise are brought together. In the past 10 years, I’ve extended this belief to patients’ participation in their care.

Gruman: How did you move from working as publisher focused on basic science to health care?

Sarah Greene:  I helped create innovative ways to share and develop molecular biology lab protocol manuals across diverse organizations and settings in the first company I founded, Current Protocols. I got into the health business by trying to recreate this approach with Praxis Press, a company that provided point-of-care online information to clinicians. We wanted to create a product with more usability, rather than just posting an existing textbook. For each health condition, we developed patient-friendly descriptions of the clinical information that could be customized and printed out by doctors.

To keep the content updated, we needed to scan the scientific literature for important findings, so we started a news service and worked with clinicians to try to define and link to good evidence.  We also published a Web-based magazine that included patient narratives and articles about the culture of medicine.  We thought it was important to bring the patient experience to the clinicians and researchers, even though this was before people were talking about empowered patients.  Anyone could read it – you didn’t have to subscribe and it became pretty popular with a lay audience in addition to physicians.  My business partner and I sold this company to Thompson Healthcare in 2002.

Gruman: And didn’t you work on the very early version of The New York Times Website?

Sarah Greene:  Yes. I was hired to develop the Times’ deeper Web content in health and helped launch the Well blog with Tara Parker Pope in 2006.  By this time, people had really started to want to talk with each other and the broader community about health and health care.  The world was a different place.  Take, for example, the Patient Voices feature – it’s a simple slide show – coupled with an audio track of five or six patients describing their struggles with a single condition.  It’s amazing how powerful those patients are!  I could see that this was just a tiny piece of what you could do to include patients in the equation.

After I left The New York Times, I spent a while as the founding managing editor of the Journal of Participatory Medicine  (JoPM).  It was there – actually, through putting together the inaugural issue with you, Jessie – that I started to see the full potential of patients participating in their care.  There were some powerful articles in the JoPM as we attempted to define this emerging field: one by Gilles Frydman on patient-driven research, another by Richard Smith on peer review and bias in publishing. Around that time I wrote an editorial that crystallized my thoughts on patient involvement, “Participatory Medicine as Revolution! Think Critically! Communicate!” And yet I despaired that this was reaching an audience that already was on board with participating in their care.

Gruman: And what are you up to now?

Sarah Greene:  Cancer Commons is a nonprofit translational medicine network that links cancer patients, clinicians and scientists in “rapid learning communities” with the goal of developing precision therapies faster and getting them to patients faster. Central to the idea is that patients are treated as partners rather than simply as subjects.  We hope that by closing the loop between patient insights and research it will be possible to speed the learning process and achieve better outcomes.

It works like this: Editorial boards made up of leading clinical researchers in each cancer curate molecular disease models (MDMs) that identify the most relevant tests, treatments and trials for each molecular subtype of that cancer. Patients and clinicians access the MDM through Web-based applications and content to inform their decisions about testing and treatment. More data is pooled from academic institutions conducting trials, clinical case studies, and patient-donated data and surveys, to interpret and discuss in forums that engage all the stakeholders.  This collaborative conversation based on large and diverse datasets will validate or refute the current MDM. The editorial boards reach a consensus about the evidence under discussion and update the MDMs accordingly.  So patients and clinicians always have access to the latest clinically actionable information.

We have seen some remarkable examples of patients joining with researchers to catapult research forward. The recent Sage Bionetwork Congress highlighted a few impressive examples of how researchers and patient groups are taking on this multiple-stakeholder model.  For example, Kathy Guisti spoke about founding the Multiple Myeloma Research Foundation, after being diagnosed with the disease, and their successes over 10 years: building a tissue bank, collecting over 3,500 bone marrow samples, collaborating with researchers to sequence the myeloma genome, and networking with 16 clinical centers to initiate 40 trials, with 4 new drugs FDA-approved and nearly 2 dozen more in accelerated trials.

We think there are many more people with cancer who are actively engaged in their care who would welcome the opportunity to participate in a meaningful way with researchers.  Many leading clinical researchers too have realized that collaborating on datasets and with patients is now possible with internet and sequencing technologies and that collaboration may be a necessity to make real progress in drug discovery. We hope, at Cancer Commons, to build the tools and provide the linkages that will facilitate collaboration and speed research.

I just read an inspiring book by Michael Nielsen – Reinventing Discovery: The New Era of Networked Science – which describes the power of crowdsourced data and expertise in the fields, primarily, of math and physics. In biology of course, the human genome project is exemplary, and Nielsen provides a roadmap for how these collaborations have succeeded (see his Ted Talk).  Here’s a great quote from the book that captures this spirit:

In an ideal world, we’d achieve a kind of extreme openness. That means expressing all our scientific knowledge in forms that are not just human-readable, but also machine-readable, as part of a data web, so computers can help us find meaning in our collective knowledge. It means opening the scientific community up to the rest of society, in a two-way exchange of information and ideas.

Thank you, Jessie, for the opportunity to discuss my latest project!

Related Links:

What’s Engagement Now? Experts Discuss Emerging Challenges series:

Interviews with CFAH’s Ziff Fellows on the challenges of patient engagement:

No Comments »

Selling Screening Tests

Trudy Lieberman
May 8th, 2012

Trudy Lieberman, a journalist for more than 40 years, is an adjunct associate professor of public health at Hunter College in New York City. She had a long career at Consumer Reports specializing in insurance, health care, health care financing and long-term care. She is a longtime contributor to the Columbia Journalism Review and blogs for its website, CJR.org, about media coverage of health care, Social Security and retirement. As a William Ziff Fellow at the Center for Advancing Health, she contributes regularly to the Prepared Patient Forum blog…more.

A few weeks ago, a letter arrived from the Life Line Screening company enticing me to come in for a “simple, potentially lifesaving screening” to assess my risk for strokes and other vascular diseases.  The pitch contained the usual scary messages, noting that “cardio-vascular disease is the #1 cause of death in the United States for both men and women.”  A small flyer inside the envelope warned that the offered “screenings will give you information that your annual check-up may not reveal,”  explaining that “ultrasound screenings can actually see inside your arteries” and reveal bad stuff that doctors can’t see during an annual exam.

As if that weren’t enough to reel in customers, the offer was framed like those bulk sales come-ons you see offered by women’s clothing chains—buy $150 worth of merchandise and get $25 off on your next purchase.  Life Line Screening, which bills itself as the country’s leading provider of community-based preventive health screenings, offered five tests: carotid artery screening, heart rhythm screening, abdominal aortic aneurysm screening, peripheral arterial disease screening and osteoporosis risk assessment, all for only $149.   That was a savings of $126 off the complete package of five screenings, which retailed for $275.

Buying in bulk seemed to make sense.  Or did it?

The answer gets into the controversial realm of screening tests.   Health policy experts implicate unnecessary tests as one reason America’s health care tab is so high, and the uber authority on such screenings, the U.S. Preventive Services Task Force (USPSTF), doesn’t always recommend every test that some physician or some outfit like Life Line Screening wants to sell.  So I went to the USPSTF website for guidance, which is what anyone should do who receives a sales pitch for screenings, no matter how inviting they sound.

The task force has not recommended peripheral artery screening or carotid artery screening for people with no symptoms. It has, however, recommended a one-time screening for abdominal aortic aneurysm in men aged 65 to 75 who have smoked and routine screening for osteoporosis in women 65 and older.  Both those screening tests got a B grade, which means there is high certainty that the net benefit is moderate or that there is moderate certainty the net benefit is moderate to substantial.  Screening tests that get “A” grades are those where there is a high certainty that the net benefit is substantial.  “A” graded tests include blood pressure screening and screening for cervical cancer.

Sometimes screening tests do turn up abnormalities as evidenced by the testimonials that sellers like to point to.  But evidence examined by the USPSTF indicates that as a whole, many widely advertised screening tests are not beneficial.

And your insurance may not cover any screenings that the USPSTF does not recommend.

Life Line Screening’s website tries to push back against official public health guidance about their tests with information they call “Health Screening Concerns & Complaints.”  The questions they pose and answers they provide are carefully worded to give both the company and screenings a favorable gloss.   One question notes for example, that the USPSTF recommends against carotid artery screen for patients with no symptoms and asks if Life Line Screening has “my best interests in mind.”

The company responds that the task force recommendation is “widely misunderstood,” and adds, “The US Preventive Services Task Force does not examine community-based screening for the purposes of early identification and treatment with lifestyle coaching and medical management, which is what Life Line Screening does.”   Another Q & A response assures customers that “even if your health screening found no problems, knowing that you are on the right track should make the time and money spent well worth it.

Doctors are also beginning to review the value of some often-used screening tests.  Nine medical specialty boards, under the leadership of the American Board of Internal Medicine (ABIM), have recently recommended that physicians reconsider the use of 45 common tests and procedures such as M.R.I.s when someone complains of back pain.   The docs’ announcement, accompanied by their partnership with Consumer Reports for a national “Choosing Wisely” campaign, is a big deal and should serve as a warning to patients (aka customers of private screening businesses) to do their homework before agreeing to screenings that are not likely to improve their health.

Related Links:

1 Comment »

Self-Efficacy, part 2

Connie Davis
May 7th, 2012

Connie Davis MN, ARNP is a geriatric nurse practitioner, health care consultant and William Ziff Fellow at the Center for Advancing Health. This blog was originally posted on Connie’s website where she blogs about improving the patient experience. You can read Connie’s blogs and subscribe to her RSS feed here and follow her on twitter at @ConnieLDavis.

Self-efficacy keeps coming up everywhere I go. I have the honour of working with the California Institute for Mental Health on the Small County Care Integration collaborative. The teams are working on integrating behavioral health and primary care. The clients they work with have serious mental illness and are often also facing physical illness, sometimes partially due to the medications they take for their mental illness. The teams are measuring the self-confidence of their clients using the question Dr. John Wasson and his team developed: “How confident are you that you can control and manage most of your health problems?” Responses: Not very confident, somewhat confident, very confident. (This question is copyright FNX Corporation USA and the Trustees for Dartmouth College.)

Dr Wasson has actually suggested that what the world needs is a “Campaign for Confidence.” I agree with him. What would happen if we stopped focusing on clinical outcomes and specific behaviors and helped people feel more confident? I’m looking forward to finding out.

What could we do to improve confidence? First of all, remember that we need to be focusing on the problems the person has, not what health care professionals think they should focus on. Corbin and Strauss, in their qualitative study of people with chronic conditions, Unending Work and Care: Managing Chronic Illness at Home (1988), provide the guidance we need. People with chronic conditions face three tasks:
1) To manage the illness (to take medications, do treatments, monitor the condition, work with the health care team, etc.)
2) To adapt life roles (how to manage daily life and demands of life in light of the illness)
3) To manage emotions (most often anger, fear, frustration, and depression)

Whenever I am in an interaction, I know these three ideas can help shape the encounter. How is the person doing with these three tasks? What can I do to help? Are they confident in these three tasks?

The next thing to do is to build confidence through mastery. This is one of the techniques known to increase efficacy. Learning new skills is important. Making action plans based on self-determined goals and achieving them is another. There are many ways to do this. The Five A’s grew out of successful smoking cessation interventions and can be useful. The way that I have found most useful recently is Brief Action Planning. Dr Steve Cole initiated the idea, and several of us have worked together to refine it. The Action Planning process of the peer-lead Chronic Disease Self-management Program is another excellent example.

The basics are the same:
1) Take a goal, which is usually something that is accomplished over months, like “become for physically fit so I can play ball with my grandson” and break it down into smaller steps that can be achieved in a week or two, like “walk around the park three times this week on Monday, Wednesday and Friday after breakfast.”
2) A good check on the plan is to complete a confidence scale of 0-10, 0 indicating no confidence to complete the plan and 10 is totally sure. A confidence higher than 7 indicates increased likelihood of success, and if the confidence level is lower, the plan is revised until confidence is high, remembering that success increases confidence.
3) The check-in on the plan is important, too, either with the person who helped make the plan or a self-check in.
4) When plans go awry, problem solving is used. The basic steps are identifying the REAL problem, brainstorming ideas and picking one to try, really try for a week or two, to see if it helps. If the first idea doesn’t help, try another, or get ideas from another. If that doesn’t help, sometimes now isn’t a good time to work on this issue and something else might help.

Self-efficacy is a many faceted concept. Hopefully these ideas provide some guidance on what to do to build it.

Read Connie Davis’ Self-EFFICACY, Part 1 here.

Related Links:

No Comments »

I’m Not Taking That Drug if it Makes Me Itch! More on Medication Adherence

Jessie Gruman
May 2nd, 2012

Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…

What do people do about uncomfortable, unanticipated side effects of medication?

The answer to this question is often: “Stop taking it.”

Our unwillingness to take our medicine as directed is often mistakenly viewed by clinicians and researchers as a sign that we are not “engaged” in our care. Baloney. Many of us would be perfectly happy to do so were it not for those pesky side effects.

This might appear to be a trivial problem unless you are the one who has it.  But given our generally casual approach to medication adherence (estimated to be responsible for more than $290 billion in health care expenses annually) it is worth a closer look at policies, incentives or new delivery system models that might help us out when a new medication makes us itch uncontrollably.

Let’s start with how common medication side effects should be handled…

In a rational world, I would call my clinician, she returns my call within 12 hours, we talk about it, she suggests cutting the dose, timing it differently or prescribes an alternative approach.  In an ideal world, I suppose this whole interaction takes place within a couple hours online with a member of my care team in my medical home via a patient portal and includes short follow up email conversations over the coming weeks to monitor both my symptoms and drug side effects.

Is that how it works for you?

It’s not how it works for the four people who mentioned this problem to me in the past week. For them, itchiness was the most popular reason given to stop taking new prescription medications (followed by wobbly stomach). This is an unscientific sample to be sure, but the number of complaints in such a short time caught my attention, as did the fact that all of them contacted their clinician to ask about whether this was normal and whether they should stop taking the drug.  And none of them got a reply within 48 hours.  That would be a lot of itching if they had waited for their clinician’s OK.

One person reported reading carefully through the package insert, WebMD and the manufacturer’s online site to find out about side effects. Itchiness was not one of them, but when he Googled the name of the drug and “itchiness,” the search came back with hundreds of reports by people who had the same complaint. Many of them reported that they stopped taking their medication—and the itch went away.  Note that these people were sufficiently “engaged in their care” to go online to find out if anyone else was scratching.

Is this a trivial problem? Not to those people with itches and wobbly tummies, certainly. Their original complaint remains untreated, plus they have added an additional source of discomfort.  But is it trivial to clinicians or employers or health plans or anyone concerned about the overall cost of care?  Perhaps not.

Drugs that are purchased but not taken are wasted. When we discontinue medication meant to cure disease or manage symptoms, predicted outcomes are less likely to be reached and this can affect clinician and institutional payment.  Employees miss work or are distracted by the original problem or drug side effects.

The size of this problem is unknown, but consider that 60 percent of the U.S. population reported using one or more prescription drugs in 2010.  That would be 12 prescriptions per capita.  In one year.  The number of different medications individuals use means that side effects and drug interactions are more common. What percentage of the nation’s $320 billion annual prescription drug expenditures could be reduced – or the effectiveness of that investment improved – by addressing this problem?  And just what would it take to address the problem of new side effects, anyway?

Here’s what solutions look like from our perspective:

First, I can hit Dr. Google. Searching produces a cascade of information, some of it useful (if only to validate my experience), but much of it is biased or inaccurate. Information can reduce uncertainty about the cause but doesn’t touch the itching itself. And I risk exacerbating my original complaint by not treating it if I stop taking the drug.

Next, I can head to the pharmacy.  Pharmacists are an excellent resource.  They can provide accurate information about side effects if I can get one to talk to me.  But they don’t know my medical history or why my clinician prescribed this medication specifically. I probably will have to provide information about all the other medications I take. And after all this, the pharmacist can suggest alternatives but can’t prescribe them.

As an alternative, I can call that handy medical advice line provided by my health plan.  Nurse advice lines present similar challenges to pharmacists, although with less specific drug knowledge.

The best alternative is to talk to my prescribing clinician.  He knows me, the history of the problem, my allergies and sensitivities, and he knows why he prescribed this medication as opposed to the generic or a similar one.  He could work with me to try different approaches until together, we find one I can tolerate that will address my original complaint. But this takes time, and my limited sample from last week suggests that many busy clinicians – generalists and specialists alike – just don’t have the back-up organization to respond to what appears to be a kind of low-level query.

The patient-centered medical home model promotes using a team approach to responding quickly and knowledgeably to such inquiries, supported by a patient portal and secure e-mail communication. But today, most people do not receive primary care in practices organized in this way.  Further, a significant percent of prescriptions are written by specialists who lack support and incentives to address this concern.

Why raise this issue?

Because it is a good illustration of how advances in health care simultaneously promise better outcomes for us (so many new drugs that can do so much more!) while demanding more from us (managing side effects, complicated dosing regimens and potential drug interactions!).  To realize the potential benefit of all the new prescription medications now available, we need to invest more time and energy in figuring out which ones can do the job, given the trade-offs of effectiveness, side effects, interactions and expense.  Obviously, we can’t make these calculations alone; we need the ongoing help of our clinicians to do so.  But our clinicians have yet to realize the extent to which these additional choices of medications require more and different conversations with us than they are used to or prepared for.

This example also illustrates a slow leak in resources – money and time: ours, our clinicians’, our employers and our hospitals.  This slow leak is one of many that undermine the potential of the nation’s investment in health care to reach its potential in improved outcomes.

And for us patients and families particularly, it tells a true story about how our efforts to use the tools of health care to live our lives free of suffering are thwarted by a mindset that equates compliance with engagement and inadvertently prevents the kind of collaboration that will give us the best shot at doing so.

Related Links:

1 Comment »

« Older Entries
Newer Entries »