Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…

Here’s the bad news: We will not benefit from the health care services, drugs, tests and procedures available to us unless we pay attention, learn about our choices, interact with our clinicians and follow through on the plans we make together. And that “following through”part?  We have to work at doing that every day, whether we feel sick or well, energetic or tired out. And if we can’t do it, we’d best find a spouse or parent or friend or social service agency who can step in to do the things we can’t manage.

OK.  For some people, this is not bad news.  This is how we think it should be: “Nothing about me without me.” For others, our personal encounters with tests and treatments and illness have taught us that this is just the way it is.

But for many of us, this news – should we have reason to attend to it – is inconsistent with our idealized vision of health care that, tattered as its image might be, will step in, take over and fix what ails us. Most of us, after all, are mostly well most of the time and our exposure to health care is minimal. 

Efforts to improve the effectiveness of health care and contain its cost have produced a number of innovations designed to help us more easily shoulder some of our new responsibilities for our health and care.  But those of us who have yet to recognize the tasks that are now ours often mistake those “patient-centered” innovations as new barriers between us and the help we need.

For example:

Finding ourselves cared for by a team shatters our expectations about having a traditional relationship with our familiar trusted doctor.  Without warning, we have lost access to a single authoritative source of care and now must rely on the advice of unfamiliar professionals whose expertise and scope of work we don’t understand.

The promise that our care will be coordinated by our primary care clinician is familiar from the last health care reform go-round and is easily interpreted that our clinician, a gatekeeper still but now cleverly disguised, will nonetheless restrict the care provided by the specialists we choose.

Similarly the convenience of a patient portal of an Electronic Health Record that provides secure communication with a team, access to test results and targeted information can be experienced as off-loading responsibility on to patients and creating a barrier to direct communication, especially among those with little computer experience and those who find deciphering medical jargon and monitoring a portal burdensome when ill.

And I still hear people describe their experience with shared decision making as an admission of ignorance by their clinician: “She’s the doctor. Why is she asking me? I don’t know what to do. That’s why I asked her,” or with concern that this is an attempt by clinicians to shift legal liability to them.

While these innovations are the patient-facing signature of the Patient-Centered Medical Home, primary care practices and clinics all over the country are implementing them as they attempt to meet new expectations about organizational quality and accountability.

Taking some time to introduce these innovations to us within the context of our personal health concerns provides an opportunity for clinicians to discuss patient engagement, that is, how critical it is that each of us participate actively in our care, while at the same time easing fears that a new tool or process signals danger, rejection, laziness or incompetence on their part.  So when introducing each of these innovations, how about a conversation that starts: You know, medicine has advanced a lot in recent years – we can do so much more now about many diseases and conditions. But many of the new approaches require that you really pitch in and work together with us to keep you as well and active as possible.

Within that context patient-facing innovations make sense:  Our new team approach means that a group of professionals here will…This is who they are and what they do and this is how it will work with and for you.  Or: In order to make sure you can get questions answered quickly  and avoid some of the back-and-forth on the phone and with appointments, we have set up a new patient portal to help us communicate more easily with one another.  Do you use a computer?….

Oh sure.  Who has time for this kind of conversation in a busy primary care practice or a clinic?  

Probably not too many people.  “This (orienting patients to changes in care delivery) is not always a first step just because it is a matter of how much the practice can effectively manage.  In addition, as they start the process, the practice is a little unsure how to communicate it to the patients,” reports Diane Cardwell, Director, Practice Transformation at TransforMed, a consulting subsidiary of the American Academy of Family Physicians. Kristen Sanderson, a certified medical Assistant at Husson Pediatrics, an Eastern Maine Medical Center Primary Care Medical Home pilot site in Bangor, Maine told me that “As far as letting our patients know about the PCMH: we have a bulletin board in the waiting room explaining what a medical home is and listing the core expectations. We also have signs in the exams room with a brief statement describing a medical home. Currently we do not do any verbal informing of PCMH.” And Leif Solberg and co-authors noted in a recent study in the Annals of Family Medicine describing trends in quality as primary care practices transform themselves into Patient-Centered Medical Homes: “As we move rapidly as a nation to encourage transformation of traditional primary care practices into patient-centered medical homes, this study adds to the reasons for avoiding unrealistic expectations about the rate of improvement in health or patient experience that will result.”

Now I really do understand that getting the EHR to work properly or trying to redesign care delivery to make use of teams, for example, are profoundly distracting, time consuming tasks. I also understand not wanting to over-promise on specific tools and approaches until they are fully implemented and bug-free.

But I also believe that it is unrealistic to expect that we will easily understand and ably engage in team care, shared decision making, care coordination and make use of patient portals of EHRs. Each of these carries the risk of being misunderstood by us in ways that further disenfranchise our efforts and good will unless it is discussed – and recognized – as the valuable tool it is.  The introduction of each innovation offers an opportunity to talk with us candidly and realistically about the need for us to play an active role in making the best possible use of medicine and the expertise of professionals as we engage the shared enterprise of keeping us as healthy as possible.