“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.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.