Shared Health Data

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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.

  • e-Patient Dave says:

    Phenomenal! Useful! How to be an empowered, engaged patient, instead of a disempowered wimp in the doctor’s office!

    06/03/2011 at 3:45 pm
  • Carolyn Thomas says:

    Well done, Dr. Susan – beautifully massaged translation of the original. Loved your “Hey Doc” instructions, too. I’m a heart attack survivor and women’s health advocate, and I’m forwarding this to other survivors and my blog subscribers to help spread this valuable content far and wide. Thanks so much.
    Cheers,
    C.

    06/03/2011 at 7:21 pm
  • Sue says:

    Thanks Dave and Carolyn!
    It’s fun to think about changing the conversation, but what are the action items? Where are the leverage points?
    Who are natural allies for transformation? Maybe malpractice lawyers and risk managers?!

    06/03/2011 at 11:40 pm
  • Ted Eytan says:

    Dear Sue,

    Thanks for changing the conversation. I, like you, don’t understand why articles are written in the context of “you need to be a better receiver of services” instead of, “the services you receive should be of high quality.” There are a lot physicians can do to make the time spent in the exam room valuable, engaging, meaningful. I get surprised that many of these pieces, like one written recently in Consumer Reports aren’t more challenging of the health care system – are they written by doctors for patients or by patients for patients?

    I would say the action items are to change the way we think first, physicians are smart, dedicated people, they will know what to do next,

    Ted

    06/07/2011 at 7:36 pm
  • Frank Ille says:

    RE: #3. You do a sloppy job describing your pain.

    PainPHA by HealthSaaS can help patients and their doctors through this challenge.
    http://www.painphr.com/EN-US/aboutus/main.aspx

    PainPHA enables patients to track medical conditions, doctors, pain locations, pain types, pain intensity, medications, naturopathic remedies, sleep patterns, treatments, therapies, exercise, activities, additional symptoms and quality of life concerns.

    PainPHA facilitates better communication between patients and their healthcare providers through account file sharing or secure private labeled Provider Portals. Patient driven report data helps clinicians monitor regimen adherence and assists in the decision making regarding both effective and ineffective treatments and medications. Clinicians may then modify treatment regimens to improve efficacy and provide patient-members with a more consistent and improved quality of life.

    06/14/2011 at 12:27 pm
  • llstovall says:

    Amazing what even the slightest change in word choice, inflection and especially non-verbal communication can make. I will probably pass out the day one of my docs asks me what I think is going on. It will be awesome though. Good thing I don’t wait for the question :) .

    09/20/2011 at 3:40 am

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