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Who Can Represent Patients?

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Many years ago, Alfred Korzybski wrote that "the map is not the territory." Gregory Bateson went on to argue that the map, which represents reality, is not the reality. This distinction has implications for the role of patient voice in health care planning and policy.

Today, many organizations are making serious attempts to include the patient voice in policy and decision-making. Unfortunately, more than a few of them are doing this by asking for advice or soliciting members for committees from organizations they perceive to represent patients such as the American Cancer Society or the Arthritis Foundation. The use of these organizations as patient representatives has several fallacies.

First, while many if not most disease-specific voluntary health organizations claim to represent the interests of patients, they do not actually represent patients. For example, the Arthritis Foundation says that its mission is "to improve lives through leadership in the prevention, control and cure of arthritis and related diseases." The American Cancer Society has a similar mission statement wherein "representing patients" is not mentioned.

Second, most patients are not members of disease-specific organizations and those who are members (or volunteers) seldom have input into the day-to-day running or policies of the organization. There is seldom a requirement that patients fill policy-making, membership or staff positions.

These organizations want to help patients by finding cures for their diseases and often contribute significantly to this aim. As a result, the organizations know a great deal about the diseases whose cure they champion and the needs of the patients who have those diseases. However, just as the map is not the territory, knowledge of patients and disease do not make these organizations patient representatives, any more than health professionals, in their efforts to heal patients, represent the voices (and experiences) of those they care for. Even when such an organization sends a patient to be its representative, there is a conflict of interest: Does that person speak for themselves and fellow patients or for the organization?

Finally, disease-specific organizations may have a conflict of interest because of their funding sources. While it is true that many have a large patient donor base, most organizations also receive funds from pharmaceutical and medical device companies. Although many health professional and health care organizations have policies about receiving industry funding, such policies are seldom clear with disease-specific organizations. Thus, having these organizations represent patients when major funding comes from non-patients and industry is a conflict of interest.

When I have discussed where to find good patient representatives with leaders in health care, health policy organizations and government organizations, a couple of concerns emerge. These organizations do not know where to find patients. Nor do they believe that patients would be willing or capable of helping them in their scientific and policy deliberations. They often talk about the need to train patients. Funny thing: I have never heard them talk about training their staff or boards to work with patients or mention the possibility of co-training patients, other stakeholders and organization representatives. For most organizations, the ideal patient representative is one who is easily available, willing to donate time, not angry, easily defers to the expertise of health professionals and is mostly quiet. In other words, they want a patient whose presence legitimizes the claim that their decision or policy was based on broad representation and that allows them to check the patient-centered box without too much trouble.

I admit that it is not easy to include patients in many types of formal expert advisory processes. However, I suggest that if organizations and policy-making bodies truly want a patient voice then there are several steps they should consider. First, they should cast a wide net for patients as PCORI did when they selected their patient advisory board. Second, they must recognize that those designated by health voluntary organizations do not represent the voice of the patient and should not be in a position to do so, regardless of how many focus groups or surveys they sponsor or pamphlets that organization produces. Only a patient can represent a patient. Third, if patient input is truly desired, the aim is not to train patients to conform to the demands of existing practices. Rather, patients should be co-trained with health professionals, policymakers and administrators to work together in this new role.

I applaud the attempts to include patient voice in all manner of deliberations about the future of health care research and delivery. But few people know how to truly integrate the experiences and perspectives of patients into deliberations about research, policy and health care practice well. There will be many false starts and bumps as we learn how to do it. As we go along, let us remember that the map is not the territory: Speaking on behalf of patients is not the same as speaking as a patient.

Stronger efforts must be made to get real patients to add their voices to the chorus.

More Blog Posts by Kate Lorig

author bio

Kate Lorig, RN, DrPH is the director of the Stanford Patient Education Research Center, professor of medicine in the Stanford School of Medicine and a William Ziff Fellow at the Center for Advancing Health.


Tags for this article:
Patient Engagement   Kate Lorig   Find Good Health Care   Participate in your Treatment   Health Care Quality   Inside Healthcare   Medical/Hospital Practice  


Comments on this post
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Susannah Fox says
January 2, 2014 at 8:41 PM

Wonderful post! Something I've run up against is that when a conference organizer is convinced that they need a patient at the table, they don't know how to find one, or what to do to truly include them.

I wrote a post that launched a fantastic conversation with concrete tips for organizations:

http://susannahfox.com/2013/11/21/patients-included/

Carolyn Thomas says
January 2, 2014 at 9:35 PM

Thanks for this important message, Kate. I laughed right out loud at your definition of "the ideal patient representative" - one who is easily available, willing to donate time, not angry, easily defers to the expertise of health professionals and is mostly quiet. You might also add there: "and not sick".

The irony for many who actually have the most lived experience as patients, particularly if diagnosed with a chronic disease (and thus arguably among the most "experienced" of patient representatives) is that such patients often spend a lot of time each day feeling really awful. As if that's not bad enough, many are also no longer able to work because they feel so awful. As if that's not bad enough, many spend a lot of time worrying about how they're going to pay for expensive meds, treatments or other therapies. And as if that's not bad enough, many suffer considerable psychosocial issues like anxiety and depression as a direct result of all of these other factors.

When I wrote about a similar theme here last month - http://www.cfah.org/blog/2013/we-are-all-patients-no-youre-not - I also reminded readers that in reality there is no such thing as a "patient voice" that speaks for all patients. For example: "Just as I do not and could not ever pretend to represent the experiences of all other heart attack survivors, those who make sweeping statements about 'what patients need' or 'what patients want' cannot possibly be speaking on behalf of all patients lumped together as if we're one big homogenized voting bloc."

I think this is an often under-appreciated qualifier in choosing an organization's "patient representatives".

Ted Eytan, MD says
January 2, 2014 at 10:27 PM

Dear Kate,

Susannah notified me about your blog post and I really appreciate the sentiment. I find it very important to find patients who can represent the community we are serving with as few biases as possible. Fortunately it's easy to have conversations about this with people who are committed to the patient voice. Thanks for all that you do,

Ted Eytan
Washington, DC

Meredith Gould says
January 3, 2014 at 1:44 PM

And then there are those of us with longtime "hidden disabilities" and chronic diseases who know oodles about our conditions and healthcare BUT do not (or can't) go public for a variety of reasons.

I was dx'd in 1986 and I couldn't/wouldn't/didn't go (semi) public about my fibromyalgia until 2012. For one thing, I didn't want to screw my employment opportunities. For another, I needed to sustain a certain level of denial for daily survival.

Jody Schoger says
January 3, 2014 at 2:34 PM

Thank you for an excellent post and discussion. I'd been working as a breast cancer advocate for a number of years when I was diagnosed with metastatic disease in April. One of the first thing on my mind was: who speaks and represents my concerns? This especially rang true when one by one, insurance carriers began jettisoning patients from their rolls in advance of the Affordable Care Act. I can't think of one cancer related nonprofit that was ahead of the game on this issue.

Of ALL the publicity about breast cancer, all the organizations and all the noise, the person to represent my interests and get the message out is.... me. Each breast cancer nonprofit "corporation" has a mission to (first and foremost) sustain its own mission. Period. To think otherwise is an illusion. I can speak to (and do) address issues of wide concern for women with metastatic breast cancer -- the uncertainty, the financial burden, lack of targeted therapies, side effects and end-of-life - but for best representation it helps when there is some understanding of the disease being studied. Too often "patient input" is sought even when organizers are clueless about the demographic breakdown of the patients they are actually seeking. A 38-year old mother of five with metastatic breast cancer is actually going to have far different concerns and issues than one who is a retired grandmother.

Most of the time common sense is involved and no place needs this more than the health care arena.

Jody Schoger

Kate Lorig says
January 3, 2014 at 4:15 PM

Thanks all--Jessie forgot one credential that is important here. I am a real patient (my 30 plus encounters with the health care system each year prove it). I was born with Gaucher Disease. This has made me think I need to change my bio.

Pam Smart says
January 3, 2014 at 4:48 PM

Thank You Kate,

Your work in self management is amazing and it is because, you have made progress in bringing the voice of the patient and the medical world together!
Your own personal history and your education have blended the two worlds and you truly understand the need for patients to be heard.
I agree we still need to do more, but we are moving forward and at our institution we have started including patients on teams, listening to their voices and realizing how much we need to learn from them.

Pam Smart

Carolyn Thomas says
January 3, 2014 at 6:56 PM

Hello Kate,
Changing your bio to reflect your lived experience with Gaucher Disease - what a great idea! Your own "credentials" as a patient are as important - and in many cases more important - than any piece of paper confirming academic accomplishments is. I'm now going to re-read this post through the lens of the new credibility you've revealed to us. Many thanks for that. . .

Ana Karchmer says
January 3, 2014 at 7:49 PM

Kate, I am a Tomando Master Trainer and a leader for several of the self-management programs. Yet I would suggest you visit the website of a very interesting organization teaching patients how to use questions and focus on decision making in order to be more actively engaged. www.rightquestion.org

Gilles Frydman says
January 4, 2014 at 6:48 PM

Just beautiful, Kate! Beautiful and so important. As the rest of your amazing work for decades now.

Your post has helped me accelerate writing this:
Error of Perspective and Map Issues: The Health Care Edition

Gilles Frydman says
January 4, 2014 at 6:48 PM

Ah. No hyperlinks in the comments!

Error of Perspective and Map Issues: The Health Care Edition

http://www.patientdriven.org/2014/01/error-of-perspective-and-map-issues-the-health-care-edition/

Gilles Frydman says
January 5, 2014 at 1:44 AM

Ah. No hyperlinks in the comments!

Error of Perspective and Map Issues: The Health Care Edition

http://www.patientdriven.org/2014/01/error-of-perspective-and-map-issues-the-health-care-edition/

Gary Sutcliffe says
January 5, 2014 at 3:16 AM

Hi Kate et al. Thank you for your post. I am a new member of the SME network of facilitators having completed my master training in Auckland, New Zealand in October 2013 under the guidance of Leona Didsbury, Charlene Pretorius and Pam Anstil.
I am also part of a consumer network with New Zealand's Health Quality & Safety Commission with consumer/patient advocacy and representation at the core of the network. I agree with your statement that only a patient can represent a patient. Here in New Zealand we have a growing workforce of people with lived experience of mental health issues being employed to improve mental health services through providing a consumer perspective. However, as you correctly point out, some of these people are employed by providers who are either under-prepared to be an effective voice and/or are restricted as to what they can and cannot do because of organisational policy and practices. And it is generally agreed that mental health services in New Zealand are more advanced in this area that most other health services. So we too have similar issues here. One thing that we (members of the Commission's consumer network) agree on is that while we bring our own experiences to the table, we also actively use our individual networks to bring the experiences of others to the table.
There is also a new (2013) social enterprise network (on Yammer) initiated by Hearts in Healthcare. This site has a number of groups including Consumer Stories and Patient Experience. This is part of my network and assists me in bringing a wider perspective to the table when I attend meetings as a consumer representative.
I hope this is helpful :-).
Cheers Gary Sutcliffe

Ian McNeil says
January 5, 2014 at 4:16 PM

I am really pleased to see this subject up for discussion again. As a UK based T-Trainer for several of Kate's community and online self-management programs who also happens to be a person with arthritis, I am a long-standing and passionate advocate of patients' voices. It has been and continues to be a struggle to get those voices heard, and I wonder whether part of the reason for that is the search by some individuals and groups for the near-mythical "patient voice". I would contend that there is seldom if ever a single united voice, rather a chorus of different voices, all different, but when properly focused and trained can produce harmony. Trouble is that to achieve anything approaching that harmony requires time and energy (but not a lot of money) and the dominant check-box culture for patient involvement is unable and / or unwilling to invest those resources, or at least currently shows no signs of doing so.
More than 10 years ago, I was involved here in the UK with something called the Medicines Partnership that aimed to develop and promote the concept of 'concordance' as distinct from 'compliance', especially in the training of health professionals. Concordance is about partnership between patient and health professional in prescribing and medicine taking, and sat very comfortably alongside self-management principles.
As part of the development plan, we trained 120 concordance facilitators - 30 each of doctors, nurses, pharmacists and patients. It made for interesting training with some distinct tensions that when handled correctly allowed the various parties to learn from one another and understand different perspectives, and led to some significant changes in attitudes. It opened up huge potential just as the funding ran out and now more than 10 years later, there is very little evidence left of our achievements, but lots of evidence of the continued need for the principles that we were espousing. It is because of this earlier taxing but rewarding experience that I would wholeheartedly agree with Kate that "patients should be co-trained with health professionals, policymakers and administrators to work together in this new role." There is so much to be done, but so much potential to achieve it that I believe now is the right time for patients' voices to be promoted to the top of the agenda and belief in / pursuit of "the patient voice" to be recognised as the mythical beast it has ever been. In fact, it would seem the need for patients' voices is greater now, at least in some areas here in Scotland. Why do I say this? Well, next month in one local government area services that take care of the elderly will be debated by local councillors and health officials - but only behind closed doors, with calls for the talks to be held in public rejected. Still much work to be done, indeed!

Caroline Struthers says
January 6, 2014 at 7:25 AM

I really enjoyed this article, and am a passionate advocate for the patient and "citizen" voice in healthcare research. I spent a year and a half managing a public engagement project for the Cochrane Dementia Group focussing on "training" carers of people with dementia in the fundamentals of health research, focussing, obviously, on dementia research in which they already had a strong interest. And crucially they wanted to do something to help the cause. We developed and facilitatied a self-training volunteer programme designed with carers in mind, but inviting anyone with an interest and an internet connection to help the Group with its work. We asked our volunteers to read reports of controlled trial reports and to populate the Group's specialised dementia research register called ALOIS (named after Alois Alzheimer) with around 20 pieces of information about the trial - eg. what the treatment being tested was, what outcomes were being measured, how many participants etc etc.. Crucially, volunteers were not required to critically appraise or comment on the research itself. (http://www.medicine.ox.ac.uk/alois/) So to use (and rather exaggerate) a literary analogy, they were learning to read at their own pace in the privacy of their own home rather than being asked to critically appraise a Shakespeare play in front of a few Oxford English professors . More information about the ALOIS Community project (which ran out of funding in June 2012) can be found here. http://alois.cochrane.org/. I wholeheartedly believe that this involvement model has great potential across many other areas of healthcare to inform and empower patients, carers and anyone concerned with making the patient voice stronger and less "token". It familiarises patients and others with the language and conduct of healthcare research. Over a relatively short space of time, the activity makes them more able to critically appraise past research and hopefully enables and enthuses them to contribute more effectively and confidently to future research by joining patient panels, advocacy groups etc. Even by enabling carers to have a more meaningful and constructive dialogue with health professionals over the care of their loved one makes the activity a very valuable one. It's coal-face learning which emphasises the need to be well-informed and reasonably objective about the research landscape as well as an expert in the condition from personal experience.

Judith Lunny says
January 7, 2014 at 12:44 AM

As a long time consumer advocate I really appreciate kate's writing. Huge steps are being made in consumer consultancy but as consumer's or patient advocates we are still faced with tokenism and very often what we say is politely listened to and answered as if we were small children being praised by the adults. However inclusion in consultation is the first step and this is being done with sincerity so let's support these moves and hope continual appraisal of the work will bring improvement.

Kathy Kastner @kathykastner says
January 8, 2014 at 6:37 PM

As a long-time admirer (bordering on worship) of yours, Kate, I hope that my comment doesn't seem to fly in the face of what I clearly agree with: that we patients need to play so much more of a role in research (and all aspects of healthcare). And (to Jessie's point) no one patient can represent all. However, in developing national patient education, hospital based tv networks (now wound-down) my mission and mandate was to find commonalities as best I could. Nothing to do with system navigation (isn't that also highly individual) but things like: being strangers in a strange land - not understanding the language; being vulnerable and therefore not having the best 'listening' or processing skills' being accountable to family/community - who may have different expectations/understandings of your health journey. Of course, having said that, what you said still remains: "few people know how to truly integrate the experiences and perspectives of patients into deliberations about research, policy and health care practice well."
Thank you for your beautifully written piece, and for all the work you do and have done for us patients. Kathy Kastner www.BestEndings.com

Kathy Kooper! says
January 8, 2014 at 10:16 PM

Interesting article!
As a patient, with chronic pain and spinal Issues, there has always been a sense of urgency for me. I have joined nearly every Advocacy Group. I don't see much improvement of the situation I am in with many others. I feel a sense of outrage, and have often had to keep quiet while a Doctor droned on about "Hysteria" or other nonsense. I have MRI pictures, yet they are ignored. I have been misdiagnosed numerous times, denied care, and I am now disabled! In 15 Years of trying to get a diagnosis, and delayed treatment, I have not found one "Advocate"! I have no rights! The only comfort is knowing I am not alone! I have had Doctor actually yell at me, as I sat there in agonizing pain, as my condition got worse!