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Is Patient Engagement a Set-Up for Failure?

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“Maybe we shouldn’t urge people to engage in their health care: it sets them up for failure and punishment from their clinicians.”

A senior patient advocate and researcher recently made this comment to a gathering of experts in patient engagement.

For a few minutes, I was inclined to agree with her. I thought back over the previous three months: the passive aggressive (and aggressive-aggressive) responses of some of my clinicians to my questions and requests; the petty pay-backs by them and their staff in the form of delays in providing records and returning phone calls; the casual and preventable disregard of my time.

This stuff wears on me, even though I am a confident and feisty patient with far too much experience being one. There are consequences to being an interested, involved participant in my care, and they are not always pretty. Why, indeed, should I urge others to take such risks?

On reflection, there are at least three reasons:

First: Not all clinicians are resistant to our participation in our care.  It’s my impression that more clinicians are interested in their patients’ engagement than ever before, but if the nurse practitioner or doctor in front of you isn’t, this is cold comfort. And having just switched doctors because my participation in decision making about my care was clearly unwelcome, I don’t underestimate what it takes to find a doctor who is a better match. But I do know that if I don’t make the effort to demonstrate that I want to participate fully in my care, I won’t have any chance to build a trusting, collaborative relationship with my clinician. I believe the potential gain probably outweighs the risk.

Second: It’s worth taking the risk because it is clear that we will not benefit fully from our health care unless we actively engage in it. If nothing else, our self-interest lies in our investment of time and energy in understanding our own health problems and the choices available to respond to them. Many of us don’t understand how much the success of our care depends on our willingness and ability to take on new responsibilities: We have to seek care from the appropriate source when necessary, present an accurate historical account of our health concerns, weigh alternative approaches to addressing them, and then agree on the ones that we are willing and able to follow through on—and then do it.

Third: Many of us are already engaged in our care – maybe not enough of us to persuade our clinicians that this is the new normal, but enough to give ourselves and our clinicians some experience in working collaboratively. However, establishing a good working relationship takes effort on the part of all parties. None of us has training in how to do it. Each of us, professionals and patients alike, bring to the table different experiences, expectations and personal characteristics. Each relationship is forged uniquely from those elements. Public statements about the importance of patient engagement gives heart to the growing number of people on all sides who believe this is the only right and viable future course for health care.

Realistically, though, our fellow patients will not ramp up participation in their care if they believe it is an optional activity to do if they have some extra time. We all need to know that it is necessary and that while it may not always be smooth sailing –our health and future depend on it.

Truth be told, I’m not sure that patient advocates are the best ones to educate fellow patients on this point.  Nor am I certain that the imprecations by the media and government agencies to “ENGAGE IN YOUR HEALTH CARE” is either the most effective message (too general?) nor the right sources (too adversarial?). Ideally, those with the most credibility on health matters – our clinicians, their practices, clinics, hospitals – would explicitly invite our active participation in our care.

Clinicians would do this by explaining our evolving and central role in our health and by welcoming us to join with them by participating in planning, decision making and follow-up to address our health concerns. Practices, clinics and hospitals could encourage greater participation by reducing the barriers we face: making it easy to understand how to use the services they provide and simple to coordinate our information and our care.

But those explicit invitations warmly welcoming our participation in our care have not been forthcoming from those ideal inviters who are distracted by the chaos rocking health care today. So in the meantime, let’s continue to hold the fort – to strengthen the expectations of our fellow patients that we can, should and indeed must summon as much energy and interest as we can to participate in our care, that is, to figure out how to use the tools of medicine to live for as long and as well as we can.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Patient Engagement   Communicate with your Doctors   Participate in your Treatment   Inside Healthcare  


Comments on this post
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Dr. George Patrin says
May 15, 2013 at 7:08 PM

Jesse,
For a minute there, you had me...thinking you were saying urging people to engage in their health care was setting them up for failure. Was the "senior patient advocate and researcher" really serious when she "recently made this comment?" If so, she should, of course, be fired. If they were being sarcastic, OK then. You said you were "inclined to agree with her?" That's sad, even for a moment. If the root cause is physicians (alone) being passive aggressive, then the answer is simple, tell them to find a new job. And that's what we do by 'firing' them and moving on to find a provider who isn't all about themselves. Your "three reasons" make sense. "Not all clinicians are resistant to (patient) participation in (their) care." Thank goodness. As a primary care doc I rely on my patients to be part of the ‘check and balance’ to providing the very best care WE know how. True, our dysfunctional system does make it very hard to 'find a new doctor' or 'health plan.' That IS frustrating and at times, nearly impossible, and it may cost us more money than we are currently paying. However, we must educate our public to do this in order to develop a "trusting, collaborative relationship" with our healthcare providers. Yes, another truism is we must have ownership if we are expected to change our behavior, to put energy into it. Self-interest is developed by desire for self-development, "investment of time and energy in understanding our own health problems and choices available." THIS IS "the new normal," it's got to be if we are to right the future course of health care. Do we really need "patient advocates" or "ombudsmen" to get quality health care? We don't if they are going to follow the old model of "Patient Representatives" who are actually "Administration Representatives" in today’s system, truth be known. Transition the old reps into "Patient and Provider Health Coaches" and we may have the right model. We all need help in reducing barriers to getting and providing health care. Hold the fort, Jesse. Let's teach our public to have higher expectations of their health care system and not give in to the status quo because it takes energy to fight and transform it.

Sandra Sebbas says
May 16, 2013 at 1:39 AM

Today I was ask to go somewhere else by my provider, I was depressed all day...until I got home and read your article and Dr. Patrin's response. Both discussions have given me encouragement that I shouldn't give up... Thanks for the reaffirmation.

Dave Chase says
May 16, 2013 at 9:09 AM

Very thought-provoking piece. How do you think it would be received if you had something along the lines of the following as a patient:
* A one-page summary of your "Medical Facts" -- HT to Regina Holliday for this concept of a summary of what's going on in your health that is inspired by the "Nutrition Facts" on the side of our food boxes.
* On that summary could be a slider bar of the desired level of involvement the patient/family in medical decisions. On one end of the slider would be "MD makes all decisions & we don't want to be directly involved in those discussions" and the other end would be the ideal CFAH/S4PM patient-provider relationship.

Perhaps the health coach/advocate would provide the patient/family with the info to decide where they wanted to be and then it could come "blessed" by a medical practice. That way, it has the tacit support of another medical provider rather than coming on too strong as the patient doing it on their own.

Look forward to your thoughts.

Jessie Gruman says
May 16, 2013 at 11:55 AM

A blog title has to grab attention, right? Thanks for your responses.

This is a big cultural change we are seeking and it will require commitment, creativity and mutual support to get there. You make a strong case, George.

I like the idea of the clinician periodically checking in on the extent to which her patient wants to be involved in care decisions. Because in my experience, the desire to participate is not monolithic; sometimes it fluctuates within a single visit: I want to be involved in deciding whether to have surgery but don’t feel the need to share the decision about which drug to take for my immediate infection. Further, my overall orientation toward fully informed participation shifts over time, depending on how sick I feel and which decision I am making.

The frequent introduction and consultation of a “tool” in the course of every conversation would be awkward and obtrusive. I advocate for greater awareness and effort, particularly on the part of clinicians.

Leonar Kish says
May 16, 2013 at 1:30 PM

Although consultation of a "tool" can be difficult, it's really hard to scale at the level necessary for physicians to engage with potentially thousands of patients. Scalable communications tools are one part of the answer to keep people and physicians engaged and enabled in care.

Dr. George Patrin says
May 22, 2013 at 8:24 PM

Leonar,
You are talking the "productivity model" with your comment "with potentially thousands of patients." We need to become population health conscious and stop overloading our practices. Fact is, if we include our patients in the thought process and care plan, there will be LESS for us to do, allowing us to care for more patients. But until we 'take back the night' (and our practices) and insist on being reimbursed for keeping them healthy, rather than only treating illness, we need to scale back our practices to provide what the patient needs to get well. Yes, that means some specialists will get less and less patients when we prevent the illnesses keeping some practices going in today's productivity model of "sickcare."

Steve Wilkins says
May 28, 2013 at 10:02 AM

Leonar,

Patient engagement, as Dr Patrin points out, is a physician-patient relationship and communication issue...not a health information technology (HIT) issue. HIT can help...but absent a strong physician-patient relationship...HIT alone can't engage.

The challenge as Jessie points out is not that physicians don't want patients "to be engaged" - by virtue of being in the doctor's office the patient is already engaged - the problem is that most physicians don't have the communication skills to be engaging to patients. They end up unwittingly disengaging patients by the way they speak and act.

Steve Wilkins
Mind the Gap