Tag Archives: behavior

The Journey Toward Participatory Design – Talk at AAHB 2012

Recently I had the delightful privilege to be asked to speak at the annual conference of the American Academy of Health Behavior. Unlike many conferences I attend, it was intimate, allowed plenty of time to network and relax, and was at a wonderful place – the Four Seasons Hotel in Austin, Texas. Planning was done by my long-time colleague Herb Severson, investigator at the Oregon Research Institute in Eugene, and Elaine Borawski, AAHB President and investigator at Case Western.

The March meeting theme, Applications of Technology in Health Behavior Change Research, brought outstanding presentations, discussions and a hands-on tech demo session. It was fun to catch up with health IT leaders including David Ahern, advisor for RWJF’s Aligning Forces for Quality and Project Health Design, the NCI’s Brad Hesse, Kevin Patrick at UCSD and the Center for Wireless & Population Health Systems, and Audie Atienza, HHS Technology Advisor and leader for mobile health, David Abrams at the Legacy Foundation, Paul Estabrooks at Virginia Tech, and Hope Lab’s Ellen LaPointe.

It was a huge treat to meet BJ Fogg and hear him talk about persuasive technologies. Even better, to hear examples of taking small steps that make a big difference in engaging people in change. If he’d ever entertain a Boot Camp for VA leaders and innovators, we’d be swimming in a Perfect Storm…

I talked about leveraging technology to Let Patients Contribute. I see a ‘journey’ toward participatory design. Some years back (not long ago!) innovators promoted information therapy – providing patients “information prescriptions.” This was followed by patient centered medical homes, or team-based proactive care, with primary care on steroids and all other care that’s coordinated. Participatory medicine — our current destination — is about shared decision making, engaged and empowered patients and families, and liberal use of electronic tools used by patients/consumers. The ideal destiny, however, is participatory design, where patients and families are an integral part of development and improvement…in an ongoing and continuous manner. Some are moving toward this, but it’s still the exception, not the rule.

What will it take? How do we increase consumer demand for participation and contribution? Will we know a tipping point when we’re in the middle of it?

All my slides are available at the AAHB website, here. The last few slides are some findings from open notes/shared clinic notes at the VA. More to come, very soon, on this truly exciting study! Let Patients Contribute!

Dumb patients? No way. It’s only normal behavior and status-quo clinical care.

A recent CNN story, 10 dumb things you do in the doc’s office, has caused a lot of discussion on ePatients.net

I agree with much of the discussion, but I take issue with parts of the article. First, patients aren’t dumb. This stuff happens, for lots of reasons. Not enough time. Fear of disclosure. Forgetfulness. Stress. Paternalism. OMG. If people never do these things during a doctor visit, it’s a miracle. Second, there is no instruction manual on “being a patient”, often stated by Jesse Gruman. It’s not intuitive to figure out how to make the most out of visits. Third, clinician communication training is, er, not done (or not done well). I was lucky. I did general medicine training in the 1980’s; we had a psychologist on faculty (Rhode Island Hospital), and her job was to hone our communication skills. How many residents have this training? Even if they do, skills degrade rapidly with lack of sleep and doctor-centric care…so it’s a constant struggle to maintain. Finally, there is no incentive to talk well. Pay-for-performance is about tests and more tests. Electronic records remind us to do things, but I’ve never seen a computer pop-up about asking a patient, What’s on your mind?

I’m glad that article was written, because things need to change. But it has to come from all sides. Patients/consumers/families need coaching about how to engage more and articulate their needs. Docs and all health professionals must learn how to foster that engagement. It requires a different kind of philosophy about care. It’s a conversation, a dance, a style. Now that we’ve done well on the science of medicine, it’s time to get back to the art of medicine.

So I’ll modify 10 things patients do…and suggest some art (“Hey Doc”):

1. You talk on your cell phone.

Instead: How important is your time? Stop multi-tasking. Focus. Would you talk on your phone during a conference with your kid’s teacher? Your car mechanic?

Hey Doc: If your patient isn’t paying attention, figure out why. If it’s not possible, validate that other things are on their mind. Suggest another appointment, a follow-up call or secure email. You’re the doctor. Diagnose multi-tasking (and, by the way, even though you think you can do it, you can’t).

2. You lie.

Instead: You have the right to not share things. If you decide to hold back, make sure it’s for a good reason. Ask yourself why you don’t want to share. Are you afraid you’ll be judged? Lectured at? If so, say someting like “I want to tell you something, but I’m not sure how you’ll respond.” That’s a signal for the doc to listen and not react. If they behave badly, vote with your feet.

Hey doc: It’s your job to make people comfortable so they share their stories. People have a right to not disclose, but if you build trust then sharing happens. Listen and don’t interrupt unless it’s necessary, and make the visit about the patient’s agenda. If you find discrepencies in a patient’s story from one visit to the next, get over it. We tell different stories about ourselves all the time.

3. You do a sloppy job describing your pain.

Instead: If you have pain, help your doc figure out what the problem is. Pain is complicated, and it’s not easy to figure out what it’s from. The doc is wondering if it’s nothing to worry about or it’s serious. They don’t have the pain, you do, so you’ll have to describe it as best you can. If you don’t understand a question, say that. If you’re having a hard time answering, say that.

Hey doc: You’re the diagnostician, you figure it out. Ask relevant questions. Ask the same question different ways. Ask a family member. Don’t make it the patient’s job to answer questions “the right way”. Don’t forget to ask, What do you think it is? The answer might surprise you.

4. You don’t state up front all the reasons for your visit.

Instead: Prepare for your visit. Write it down! Send yourself a text message! This goes with #1 – use your time wisely, your time is precious.

Hey doc: Ask, What else? Then ask it again. If it’s chest pain – deal with it. If it’s knee pain present for 5 years and you’re 45 minutes behind, make a plan to address it. Use secure email for goodness sake and have a team-based approach to communicate between visits. Orient your patients to how to communicate with your office, and do it all over again when they need it.

5. You don’t state up front your expectations for your visit.

Instead: Prepare. What do you really want to get out of the visit? Write it down. An explanation of what’s wrong? To be reassured nothing bad is going on? To make sure all your preventive care is up to date? To say the medicine you tried didn’t work, and gave you side effects? To tell about stress, and how it’s affecting your work or your love life? Be honest with yourself, and take control of the visit. If you think your list annoys the doctor then say, Is there a problem with me having a list? I use it to make sure I don’t forget anything.

Hey Doc: This is medicine 101 – ask up front what someone wants to talk about. Back to #4, ask What else? Doing this may seem to make the visit longer but it doesn’t. It’s OK to have your agenda, like that daily alcohol…but their agenda comes first. Do you need research on this? It’s there: more trust, better outcomes, higher patient satisfaction with you.

6. You don’t know what medications you’re taking.

Instead: You are the only one who knows what you’re doing with your health. Taking medications is a big one. This goes with #2, about sharing your story. If you have a hard time remembering to take your medicine three times a day, share that. If you can’t afford it, say that. If you have side effects, let the doc know. Ask about alternatives. There might be something easier to do. Do you understand why you have to take all those medicines? Ask. In the end, it’s up to you to make choices about what to take and how to take it.

Hey Doc: How do you spell Medication R-E-C-O-N-C-I-L-I-A-T-I-O-N? What does reconciliation mean? To make compatible or consistent. It’s part of your job description. The first step is to identify reality – figure out what a patient is actually doing with their medications. Then reconcile this with your recommendations. This is where it gets really fun: figure it out together!

7. You leave with unspoken questions and concerns.

Instead: Don’t leave questions unanswered. Do your own research, but balance getting information on your own with information from a health professional. Figure out how to get care between visits. Ask the doc if they use secure messaging (not insecure) so if you have additional (non-urgent) questions, you can send one in at 3 AM. Ask what number to call to talk to the nurse, the doc, to anyone. Put in on your phone and stick it in your wallet.

Hey Doc: Provide access to you and your team between visits. Enough said.

8. You don’t bring your medical records or images with you.

Instead: If you get care at multiple sites, don’t assume they have all your information. YOU are the best record-holder, so sign those forms called “Release of Information” and get copies yourself. Read the records, and make sure they’re accurate and complete. Ask if there’s access to records through the Internet. If so, sign up today.

Hey Doc: Find out about other providers and tests and have a complete record. Offer a patient portal and share information electronically. Print out copies of results or progress notes so they can take it with them to other providers.

9. You’re too scared to disagree with your doctor.

Instead: If you don’t agree with your doc, say so, without arguing. There’s not much else to say about this. Insurance companies may pay for a second opinion.

Hey Doc: You’re not responsible for your patients, you’re responsible to them. An engaged patient asks questions, looks for answers, weighs information they get on their own with information from experts. They work to identify all options and make decisions. Embrace this, because it makes for a better interaction and happier patients.

10. You don’t comply with the treatment plan.

Instead: What is the treatment plan? What are the options? Make sure you know what they are, and why they are recommended. Figure out what is realistic for you. Maybe you want to do it, but have a hard time. Maybe you need to take smaller steps. Maybe you don’t agree with the plan. Be honest with yourself and then be honest with your doc.

Hey Doc: Learn how to do shared decision making. It’s all the rage.

Personal health records and consumer health IT: Are we going to lead, or follow?

Last month thought leaders and researchers in behavioral medicine and informatics gathered at the National Press Club, focused on consumer health IT. The event, Behavioral Informatics for Health was sponsored by the Society of Behavioral Medicine (SBM), American College of Preventive Medicine (ACPM), Association for Prevention Teaching and Research (APTR) and the American Medical Informatics Association (AMIA). The thrust was a spotlight on two journals with entire issues devoted to consumer and behavioral informatics: the inaugural issue of Translational Behavioral Medicine and Cyberinfrastructure for Consumer Health, the May issue of the American Journal of Preventive Medicine (AJPM).

The session was superbly organized and moderated by David Ahern, Director, Health Information Technology Resource Center, Aligning Forces for Quality, Brigham & Women’s Hospital. He’s a driving force for patient and consumer engagement, interlacing behavioral science and health IT to improve population health. I’ve had the pleasure of knowing David since he lead the Health eTechnologies program for the Robert Wood Johnson Foundation. And he was the first person I ever heard say, “meaningful use is behavior change”. I couldn’t agree more.

Editors Bonnie Spring (TBM) and Bill Silberg (AJPM) launched the session by talking about creating the future using patient-centered computerized tools to deliver participatory medicine. An amazing line-up of speakers and pioneers presented (listen here), including Karen Emmons, SBM president. She stressed the need for patient-entered data in EHRs to enusre patient-centered information is front and center. M. Chris Gibbons, book author, researcher and Assoiate Director of the Urban Institute at John Hopkins, summarized the growing evidence base showing positive impact of consumer health IT interventions. Mike Painter, RWJF Quality Team, advocated for solutions that give people more information to help them make decisions. He cautioned the crowd not to get too mired in the evidence so as not to slow them down.

Also speaking were Ted Shortliffe, AMIA President, Josh Seidman, Office of the National Coordinator, Helga Rippen of Westat, and W. Ed Hammond , former AMIA President and HL7 Chair, who really connected with the audience. He thought speakers were skewed toward technology, rather than toward patients, feeling compelled to tell his story. “My favorite exercise is aging. Every day is a research day for me. In 1990, I weighted 160 pounds…then gained a pound a year. My family doc found a Hemoglobin A1c of 7.9….so I became aware of blood sugars. I [went to the Internet and found out] – don’t eat potatoes. Now I exercise, and do ballroom dancing.

We’re not interested in being in love with out doctors. We’re not even interested in a relationship. We want our doctor to paly a role. – W. Ed Hammond

For the AJPM issue, David invited me to co-author a paper on consumer IT from the viewpoint of patients. Honored, I joined co-authors Tom Houston (UMass and Beford VA), Scott Finley (VA Office of Health Information) and Marie Lightowler (Brigham & Women’s Hospital). Titled Promise of an Potential for Patient-Facing Technologies to Enable Meaningful Use, We described a taxonomy of PHR services and tried to predict patient value.

Patient-facing information and services. Amer J Prev Med 2011;40:S162–S172

The Figure shows three major types of patient-facing IT: transactions (e.g., medication refill and bill pay); expert care (such as access to electronic record notes and data, emailing doctors, or online chats with pharmacists or nurses); and self-care & community (peer online support, symptom checker, self-monitoring, requests for screening tests due). Email me woodssus@ohsu.edu if you’d like a copy.

Of course, no one yet has connected all these “dots”. Maybe it’s unrealistic to expect one health system or stakeholder to provide this spectrum of value. I’d say that whoever gets the closest to this model may find a piece of the rainbow. I’ll quote Dr. Chris Gibbons, who reminded us that academic institutions disregarded Complementary and Alternative Medicine until potential revenue couldn’t be overlooked any longer. He wondered if healthcare was going to ignore the power of consumer informatics, stating “our patients are already there”, and challenging us by asking, “Are we going to lead, or are we going to follow?”