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What It Will Take to Embrace Participatory Medicine: One Patient's View

Abstract

Summary: I have the honor of writing this introductory piece for the Journal of Participatory Medicine (JoPM) from the viewpoint of a patient. To do this I must drop my academic titles and replace them with my qualification for the task at hand. I was born with a rare genetic disease. In my six-plus decades of life I have acquired a few more chronic conditions and am still thriving, even after treatments for cancer. I experience an average of 30 or more encounters with the health care system each year and half that number with my insurers. In addition, during my academic career I have helped thousands of people participate in their care through the development of the Chronic Disease Self-Management Program, and I have learned much from their stories.

Keywords: Participatory Medicine.
Citation: Lorig K. What it will take to embrace participatory medicine: one patient's view. J Participat Med. 2009(Oct);1(1):e5.
Published: October 21, 2009.
Competing Interests: The author has declared that no competing interests exist.

I have the honor of writing this introductory piece for the Journal of Participatory Medicine (JoPM) from the viewpoint of a patient. To do this I must drop my academic titles and replace them with my qualification for the task at hand. I was born with a rare genetic disease. In my six-plus decades of life I have acquired a few more chronic conditions and am still thriving, even after treatments for cancer. I experience an average of 30 or more encounters with the health care system each year and half that number with my insurers. In addition, during my academic career I have helped thousands of people participate in their care through the development of the Chronic Disease Self-Management Program, and I have learned much from their stories.

More than a half century ago, the great sociologist Talcott Parsons wrote about the role of the sick: they were not expected to maintain their normal responsibilities but were expected to do what they could to get well. Parsons lived in a world in which acute disease predominated and patients would often transition between the sick state and wellness. The world has changed. Today chronic conditions predominate, from which one never gets "well" but, at the same time, one is not "sick." Sickness and wellness now seem to depend on the context in which we find ourselves. In my case this means that I am well when I fulfill my role as a university professor—teaching, meeting with students, and conducting research. I am sick when I enter the hospital across the street to receive an infusion. Then I am well again two hours later when I leave the hospital. In these situations, my health status or feeling of well-being does not change. However, as the context changes so does the demand on me to attend to my health and participate in the health care delivery system.

We live in a diverse society, where age, race, ethnicity, and gender only begin to describe the differences among us. The ways in which individuals participate in their health care is also diverse. Of course, as patients, we always participate. We have no choice. Rather, our participation styles differ. Some of us actively seek out knowledge, research our providers, and question their treatment recommendations. Some comply carefully to all recommendations from our providers. Some of us embrace lifestyle changes, some of us struggle with them, and some of us find them impossible. My experience as a patient has taught me that education, feistiness, and wishing to participate actively in my care do not predict how I am going to respond to an illness episode or determine what I will need from my providers. My involvement changes as my disease, my capacity for complexity, and my emotions change.

I have inhabited the land of the ill on and off throughout my whole life. The following observations about what it will take to reach a point of a truly participatory health care enterprise are from the perspective of one "well-sick" person.

How Can Health Care Systems Foster Participation?

The first point of contact should allow participation

Most of our health care encounters that aren't in the physician's office are with a phone call, or occasionally, a website visit. Our intelligence and patience are tested by having to listen to automated messages and pressing numbers and then waiting and pressing more numbers and waiting... If we pass that test we might actually get to talk to a person. However, that person is usually a clerk offering a limited range of options. If our needs fall outside of that range, one of two things happen. We either are scheduled to come in and talk to someone with more expertise, usually requiring time off from work, or we have to start all over again. Such strategies to screen and triage our concerns are discouraging. While this approach may prevent some unnecessary care, from my experience, this can be dangerous and also costly—not only to me—but to my employer and my insurer. A clinic, practice, or hospital that endorses participatory medicine will always welcome me.

Medical practices and centers should be clear about the rules of engagement

Depending on the kind of care we seek, it may need to take place the same day we call or we may have to wait for months. We are seldom asked about our perception of urgency, given an explanation of the scheduling system, or even told that we might get an earlier appointment if there is a cancellation. (I've found that this latter information seems to be secret, but with effort and experience, we may discover it.) How can we participate in our care if we are kept in the dark about the basic rules of engagement? A clinic, practice, or hospital that endorses participatory medicine will tell me how I can best make use of its services.

If you value my participation, you will value my time

When we enter the clinic or practice office, we encounter more obstacles. We typically register with people sitting at high desks or behind frosted glass and are then sent from place to place within and between buildings with various errands—to get stickers, present an ID, or provide insurance credentials. Often, I have been treated like a poor petitioner or a petty thief. It is often easier to get through airport security than it is to get care.

In one of my regular clinics, I am met with a sign that tells me that if I am a half hour late, my appointment will have to be rescheduled. I once asked what would happen if I were not seen in a half hour and was told to sit down and wait. Last year while waiting for scheduled appointments I read five full-length books (five hours each). Most of us have had similar experiences as when we are patients. The bottom line is that these are not arrangements that support—much less foster—our positive participation. Rather, they spark our anger. A clinic, practice, or hospital that endorses participatory medicine will  include our experience as a critical aspect of the quality of care it delivers and will set up scheduling systems that reflect concern for the patient's time as wells for the providers.

Advice for Potential Participatory Providers

Welcome us to participate in our care to the extent we are able

Some providers wish to join with me to manage or cure my disease and some of them even suggest that patients should act like clients and demand value from each encounter. I certainly do this when dealing with the plumber, but I deal differently with my doctor; she holds my life in her hands. More than once I have found myself simultaneously being the protagonist and the mediator with my doctor, required to be both subjective and objective about my own treatment. Despite the fact that I am highly educated and skilled in caring for myself, I find this role difficult and stressful. In talking with hundreds of patients over the years I have learned that given the choice of risking antagonizing our provider by asking a question or being passive, most of us choose the latter. The provider who practices participatory medicine recognizes and works with the strengths and resources we bring to each encounter.

When there are real choices, tell us about them

Many of us like to make our own decisions in general and appreciate your sharing your knowledge and opinions, but we vary widely in our preferences and abilities for making the complex treatment decisions. Remember, we are still participating if we tell you to make the choice, if we want to make a choice without your help, or if we give this responsibility to a family member. In all cases, we are participating and making the decision. The provider who practices participatory medicine accommodates our different styles, preferences, and abilities in making decisions about our care.

Ask us to come to each visit with a short list of questions we want to discuss

With such preparation, we can expect to be listened to and also that we will discuss the items on our list. The provider who practices participatory medicine recognizes that health care is a foreign language to many of us and willingly translates for us.

Remember that most of us are frightened, no matter what we say

We come to you when we are not at our best and are sometimes treated as though we were bothering you or that we are stupid because we did not follow rules no one told us about. Ask about our fears. Let us know you are open to discussing them. For example, you might say, "Many people in your situation have concerns about this treatment. What are yours?" The provider who practices participatory medicine is attuned to the emotional as well as physical demands of our illness.

Share our test results with us in a timely manner

Many of your treatment recommendations and choices are based on tests and procedures that seldom take place during our appointment with you. Sometimes we never get results, sometimes we get results weeks later, and often we are told that we have to ask our doctor to interpret the results for us. If I had not insisted on getting test results myself, my diagnoses of both cancer and a serious lung condition would have been delayed. To you this may be is an optional administrative matter. To us, it is can mean sleepless nights or the risk of not following up on a positive finding. The provider who practices participatory medicine makes sure we have the information we need to take the next steps for ourselves.

New Expectations for Patients

Wikipedia defines a patient as "any person who receives medical attention, care, or treatment. The person is most often ill or injured and in need of treatment by a physician or other medical professional". According to this definition, the patient is sick, passive, and in need. Indeed this is how we are often treated. To change this relationship, I would suggest that, as patients, we have specific responsibilities.

When we participate in our care, we will talk openly with our providers

In order to get good care we must be good historians. We must describe the severity and the tempo of our symptoms and share what we are willing to do or not do. If we have no intention of taking a medication, for example, we must say so, and describe the reason for our choice.

When we participate in our care, we make our preferences known

We should tell our providers how best to communicate with us, how we prefer to make decisions, our treatment preferences, and the trade-offs that we are willing to accept for better health and what care we wish at the end of life.

When we participate in our care, we ask questions

If we do not understand, we must say so. On the other hand, if the provider starts a long explanation of something we already know, we should also say so.

When we participate in our care, we follow through on treatment plans

If we agree to take a medication, we should take it as prescribed or discuss possible modifications with our provider. If we promise to exercise, we should do it. If we can not or do not follow through we must talk about alternatives with our provider.

We should make it our business to know about our treatments, including medications and any tests we have had recently

Medical record systems are far from perfect and we may be the only one who can  keep all of our information together. This means that we should—for our own benefit, as well as for our providers'—maintain our own health records and bring our recent test results and important information with us to appointments—just in case.

The Bottom Line

Many years ago, the editor of Medical Self-Care Magazine and the person to whom this edition is dedicated, Dr. Thomas Ferguson, MD wrote "Doctors would get off their pedestals when patients got off their knees." Participation means that we as patients, we as providers, and we as health care system managers must be willing to acknowledge our interdependence and meet on a level, if changing environment. To do otherwise is dangerous and will lead to poor outcomes. We have no choice.

Copyright: © 2009 Kate Lorig. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

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