What would a checklist for patients look like?

This springs up from a Twitter discussion this morning. It’s Atul Gawande’s fault, for his book “Checklists.” :-) Forward-thinking clinicians are doing it; participatory patients should to.  Let’s get to work.

Checklists in hospitals can dramatically reduce infections; checklists in the operating room can prevent all kinds of simple human errors even among brilliant conscientious people. There’s evidence for that.

Non-Twitter people, ignore the Twitter shorthand – this is just a quick way for me to capture the public discussion:

Me: RT @LeanBlog @flinchbaugh: A good read…What Sort of Checklist Should You Be Using? – Justin Fox – HBR http://ow.ly/1nhB2

@Lygeia: What would a checklist specifically for patients look like?

Me: Did you see Peter Pronovost in NYTimes last week on that? Do you know @TrishaTorrey’s “You Bet Your Life” book?

@Lygeia: “You Bet Your Life” by @TrishaTorrey looks closest–I just bought it–thanks!

@PNSchmidt (a Parkinson’s Disease specialist): My org and PDSociety UK have checklists for patients: http://bit.ly/9NCsoq http://bit.ly/cYGBoR

Robert Wood Johnson Foundation’s Pioneer Portfolio likes the discussion:
RT @ePatientDave: Great question! Let’s discuss RT @Lygeia: @ePatientDave What would a checklist specifically for patients look like?

A new voice (new to me), INQRI, pops up (“The Interdisciplinary Nursing Quality Research Initiative does research to understand how nurses contribute to and can improve the quality of patient care.”:
patient checklist might include: have list of current meds, tell every1 to wash hands, ask questions

@Lygeia: Thanks @pnschmidt I especially like patient checklist at http://bit.ly/cYGBoR

@Lygeia: A streamlined, smartphone-based patient checklist would be cool INQRIProgram @pioneerrwjf, @ePatientDave

@INQRIProgram: you may be interested in some work we’ve done involving patients’ contributions to quality. http://bit.ly/92Ktgi

What do you think?


Posted in: pt/doc co-care | Why PM




22 Responses to “What would a checklist for patients look like?”

  1. Thanks, Dave —

    Easier to take this off twitter so responses can be longer & others can participate.

    One thing I’d like to include in a checklist is that the patient ask their provider what to do with any follow-up questions or concerns. I’m wrestling with that one right now. A Dr. prescribed a medicine for my (infant) daughter and I have questions about its use–what precisely it is intended to accomplish, and whether it’s safe for a baby. I did some online research but can’t find answers I’m comfortable with. I don’t feel good about giving my daughter the drug without more explanation. But I don’t want to wait until the next appointment to ask the Dr. I also don’t want to bother the Dr with a lengthy phone call. Many doctors don’t use e-mail… so now what?

    More patients asking a Dr how to follow up with them will (I hope) encourage more Drs to get online and incorporate email (and, more importantly, ongoing communication generally) as part of their “service”. I know financial incentives don’t support that yet, but it doesn’t mean patients don’t need it. We have to start changing the system somewhere — so why not better focus patient demands?

    It occurs to me that some of the stats you see re patient “non-compliance”… like not filling or taking prescriptions, for example, are not because patients are lazy or don’t care, (or can’t afford it–though I’m sure that’s part of the picture), but because it’s very hard to follow up if there is a question or an issue… the path of least resistance is to not take the drug.

    • Lygeia,

      Great real-world example.

      May I ask for a moment of self-reflection? What has you think of it in terms of “bothering” the physician?

      It’s great that you said “lengthy phone call.” Dr. Danny Sands’ 1999 guidelines for doc-pt email advised keeping it short. Same for phone calls, I think.

      In my view you have EVERY right ask for what you need as a customer of this provider. I’m just as sure you wouldn’t have picked a disempowering one, so I’d just call and say “I have an important question that I want to discuss with the doctor. What’s the best way? S/he’s welcome to email me or call. I’ll be as brief as possible, for both our sakes.”

    • Lygeia,

      this is a classic example of a situation where an online community of informed e-patients should be able to help you by providing the feedback you need almost on the spot. Based on your email there is really no reason the physician should be the one answering the question, particularly if the treatment is standard and the medical problem well understood.

      Doctors are overwhelmed and there is no reason why, in the age of the vastly increased public access to medical information, communities of patients and caregivers can’t help alleviate the problem.

      You’ve just provided another reason why participatory medicine is centered around the networked patients.

      • Gilles and Dave —

        Both of your raise good points.

        You’re right, Dave — I really shouldn’t think of a phone call (or any communication) as “bothering” the MD. And my intention would be to keep the phone call short.

        While I blame the system more than any individual, I am reacting to a perceived sense I have gotten that I’m meddling if I try to engage too much. There are a couple of ways to address this issue, including: pick your healthcare providers carefully (when possible–which it’s not, always), forge ahead and ask your questions anyway (if the Dr seems brusque or displeased, get over it–you need to meet your own needs and improve the system), join online communities that can help support you as a patient. Obviously this latter approach is an attractive one, provided you know of such a community. (One challenge, though, is finding the right community when you need it–I will take a better look.) Thanks!

        Back to the birds’ eye perspective — a patient checklist should include something to help patients navigate their health in between MD encounters — part of which should be via finding relevant communities.

        • So, Lygeia, this is E-Patient 101: “empowered” means being clear that you can ask for what you want. NOT being able to is the definition of being disempowered.

          Think you’re being too progressive? This refrigerator magnet carries a quote from 1946 – the first words of Benjamin Spock’s baby book:

          If you can’t ask for what you want, you can’t be Engaged (E #2) in care. That’s especially important on a safety concern for the patient, young old or yourself. Having such a concern, and resolving it, is the essence of being a responsible partner.

          Don’t fall prey to any real or imagined arrogance. During my illness I wrote to my oncologist with a major question – reading a radiology report it looked like one of my tumors had grown 30% in two weeks. I emailed my oncologist, Dr. David McDermott – one of the best in the world for my disease! – and he explained that I was mixing up x, y, and z dimensions. (I didn’t understand the word “craniocaudal,” the “spine” direction.) I apologized for taking his time and you know what he said? “I am happy to field your questions.”

          Is there any reason on earth to expect less from any (ahem) care provider?

          Note that I didn’t say “Be obnoxious.” I’m not obnoxious to my clinicians. Obnoxious is only appropriate when somebody’s refusing to do their job, e.g. in Alan Viars’s story of his father’s medical records fiasco, when employees refused to honor the law.

          Expressing a concern to your provider is responsible, not obnoxious. I’m sure they’ll understand.

    • Lygeia,

      You raise an excellent point: “join online communities that can help support you as a patient. Obviously this latter approach is an attractive one, provided you know of such a community. (One challenge, though, is finding the right community when you need it–I will take a better look.) ”

      I am now actively working to help build such a centralized resource about medical online communities. It is an important component to help people find the right information about their medical issues and should help federate the large numbers of people who are already practicing some aspects of participatory medicine without even knowing anything about it.

      • Gilles —

        That sounds very useful… I will watch/listen for it. I will be interested to see how you structure it, how you define communities, how you get the word out, etc — good luck!

        – Lygeia

  2. Lygeia says:

    RT @ePatientDave: New post "What would a pt chklist look like?" Comment pls http://is.gd/aM1l9 @Lygeia @pnschmidt @INQRIProgram @pioneerrwjf

  3. Amy Romano says:

    Dave et al, are you familiar with AHRQ’s “Questions Are the Answer” question list builder tool? Check it out.

  4. Pete says:

    Checklists are especially important in chronic care and in care of frequently monitored populations (e.g., the very young and the very old). In each of these cases, clinical encounters can be dominated by the “tyranny of the urgent,” and issues of maintenance get ignored. (This was addressed in an excellent series in JAMA around 2000.) A patient checklist should consist of three sections: (1) stuff to do to prepare for the appointment and things to bring with you; (2) disease-specific questions to ask and topics to discuss indexed to the stage of your illness; (3) data to record between appointments and blank spaces to add your own questions. An iPhone ap for this could be excellent… Patients should record sub-clinical issues (i.e., the kind of things that don’t make you schedule an appointment) in order to have them front-of-mind when they do schedule one.

    For example, many patients with Parkinson’s have complex medications that require careful titration in order to maximize the benefit. Talking about medication can dominate a clinical encounter, however constipation, which is both a symptom of PD and a side effect of some medications, can cause dangerous complications and waiting until it becomes the urgent complaint could be too late. Sexual dysfunction can strain the patient-caregiver relationship from both sides, but is rarely the reason for an office visit. Your physician may be too rushed or distracted by your primary complaints to remember to bring these up. A patient checklist can be invaluable in optimizing the use of a patient’s brief time with the physician.

    Care today is more complicated, effective, and wasteful then it ever has been in history, all at the same time. (Pre-1900, care did very little, but it was pretty cheap.) We need everyone participating to make it work.

  5. New post "What would a pt chklist look like?" Comment pls http://is.gd/aM1l9 @Lygeia @pnschmidt @INQRIProgram @pioneerrwjf

  6. What would a checklist for patients look like? | http://ow.ly/1nRDp | #hcn #healthcare #hospitals #epatient #fb

  7. Eva J. Mah says:

    RT @medxcentral: What would a checklist for patients look like? | http://ow.ly/1nRDp | #hcn #healthcare #hospitals #epatient #fb

  8. carlosrizo says:

    RT @rawarrior: RT @medxcentral What would checklist for patients look like? http://ow.ly/1nRDp #epatient => Have to find Dr who'll tolerate

  9. Howard Luks says:

    Dave… I tried to touch on this subject and put forth suggestions for patients who are getting prepared for either their first visit to a specialist or perhaps a pre-surgical indications visit to explore alternatives.

    no questions… lists saves lives… I use them daily in the OR and in the office. If patients understand how physicians think through a problem and how the questions will come to them (format, etc) they will be better prepared, less apprehensive and they will help ME, help YOU! Lists have the ability to transform the delivery of care and the safety profile and quality of the care delivered.



    I know you hate if I re-post things on Twitter :-) even if by accident :-( but revisiting these from time to time will prove useful to many patients…. since everyday new patients are *borne*. This info must *live* in an environment where it is easily recirculated to those who might find it beneficial.

  10. I am curious if any of the clinicians that may read this post are familiar with the concept of: “”La maladie du petit papier?”

    As recently as the mid-80s, some medical text books suggested that “writing lists” to share with their doctor was a symptom of a patient emotional disorder.

    Like the “soup Nazi” on Seinfeld, I will never be caught dead bringing a list of questions into my doctor. – Just kidding.

    • Stitch says:

      I too have heard this, and as a result NEVER take a checklist to a new doctor. I also never go to a new doctor alone, and there are some doctors that I refuse to see without my husband in tow. The number of doctors that are white-coated bullies never ceases to amaze me.

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