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Don't Miss the Chance to Engage Us in Our Care When Introducing Patient-Centered Innovations


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.

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

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Comments on this post
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susan256 says
November 30, 2011 at 3:59 PM

This "new" approach to health care - whether it's called patient-centered or some other name - is primarily about getting the human relationships back into care. Being comfortable enough with your doctor(s) to ask hard questions is a good thing. Asking what tests costs (and demanding answers), if generics are available or if there are a variety of treatments available for your condition, will keep patients informed instead of blindly doing what we're told.

admin-staff says
December 1, 2011 at 1:01 PM

Your remarks nudged me to write about all the language around â??patient centerednessâ??, â??medical homesâ??, etc.:

First, it feels that these concepts, and many, which are attempts within the medical community to get more patient-centered, are answers to questions the patient never asked. This is the big disconnect. When these innovations are presented as information to take in and understand, there is not a place for them in the patientâ??s brain, because they just feel irrelevant. Itâ??s the same reason that you donâ??t notice how many car commercials are on TV unless youâ??re in the market to buy a car. We just naturally screen out what is irrelevant to us. We donâ??t even see it.

If we want to get truly patient-centered, a number of things need to change, and it would be very useful to use learnings and methodology from the consumer products industryâ?¦an industry that canâ??t flourish unless it understands who their consumer is (both demographically and psychographicallyâ?¦i.e. â??how they thinkâ??), whatâ??s relevant and meaningful to their consumer, which alternatives are the best way of delivering on whatâ??s most relevant to their consumer, and how to communicate in a way that the patient/consumer also AGREES that what is being offered is an answer to a relevant need.

It means we must pay careful attention to the language we use, and make sure weâ??re not communicating something, in thoughts OR in feeling, that we didnâ??t intend. â??Medical homeâ?? may well be a prime example of this. It means we must not skip steps in figuring out solutions to a problem.

There is a disciplined process to understanding consumer needs, delivering a benefit thatâ??s meaningful to them, backing it up with support that proves that the benefit will really be delivered in a stellar way, and making sure itâ??s all communicated in a way people understand.

Instead, the medical community is assuming the solutions are correct without first clarifying the questions in the patientsâ?? minds, and is then requiring them to learn a new language to understand the new ideas that started out as irrelevant in the first place. This is not a recipe for success.

The issue is not just that the medical community is not communicating these concepts to the patient (which they are not); itâ??s more that the â??answersâ?? that are being instituted are the result of a â??pushâ?? on the part of healthcare, rather than â??pullâ?? on the part of the patient. Much of this can be remedied with a different, well-studied approach.

[this reader comment from Julie Fox of Brandbuilders was submitted by email to CFAH staff for posting]

chasedave says
December 3, 2011 at 11:17 PM

There are two major limitations with the fundamental design of EMRs that impairs the highly desirable goals of what you outline in this post:
1. All the EMRs I have seen or worked with (and HealthIT in general) is their fundamental design point is focused on billing/coding and are focused on internal work flow
2. The individual (aka patient) is viewed by these systems as a vessel to attach billing events to as opposed to the most important member of the care team. Bolting on a patient portal after the fact and then having a one-way broadcast of information is further indication of not treating the individual as a critical member of the care team.

Consequently, the "state of the art" when it comes to 99% of MDs is patient engagement tools are sheets of paper. As reimbursement shifts to outcomes/value vs. the "do more, bill more" model, I don't see how MDs can thrive in that without viewing the individual as a core member of the care team. After all, even someone with a chronic conditions spends less than 1% of their life at the provider's clinic and the other 99+% of their life will determine whether their return to health. The sooner the reimbursement shift happens, the better for individuals and better outcomes.

If you want a preview of it in action, study the retainer-based practices. They already have the economic incentive to view the individual as a core member of the care team. Concierge medicine, like airbags & anti-lock breaks, were once only available to the well-heeled. The great news is that model has been taking to the masses (like airbags/anti-lock breaks). These models are expanding all over the country but haven't been written about much. If you want to get a preview of the future, talk with some of the folks highlighted in these articles -

Keep up the great writing! It's much needed.

December 5, 2011 at 2:10 PM

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December 5, 2011 at 2:14 PM

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