Jessie Gruman, who sadly died July 14, 2014, was someone I greatly admired as a person and as a patient activist. I interviewed her in late April for research I was conducting on patient activism, and she graciously allowed me to publish the interview, wanting, not surprisingly for those who knew her, to do everything she could to use her experiences to help others.

Lisa: Why did you become a patient activist? Was there a specific incident or series of incidents?

Jessie: I worked on patient engagement for many years prior to speaking as a patient. My original impetus to work on these issues was probably receiving my first diagnosis of cancer at age 20 and being shocked at how non-compliant I was, even though my best chance of surviving depended on me behaving myself. How could this be?

I didn’t feel particularly pressed to speak from the perspective of a patient until my third cancer diagnosis in 2004, when I realized that the patient voice I was hearing in the media and around health care was unrealistic and tended to depend on war metaphors. Those patients who were speaking out with their “can-do” attitude based on limited experience with serious illness  in no way represented my experience of having to work so hard to find the right care for me and to go through difficult surgeries and treatment regimens while feeling really bad and wondering if I was going to live.

I was astounded at how much of my care I had to organize and direct — more with each of my five cancer diagnoses. How do people who know less and have fewer resources manage this? It was this astonishment – and my realization that our ability to engage effectively in our care constitutes an equity problem for all of us – that motivates me.

Lisa: What were the steps you took?

Jessie: I started an organization with unrestricted support from the John D. and Catherine T. MacArthur Foundation to address these concerns. I have been successful in raising over $27m of mostly unrestricted money for this organization.

Lisa: Were there barriers such as stigma or privacy at specific points that you had to overcome?

Jessie: I have always believed in “in for a penny, in for a pound.” If I am going to speak as a patient, nothing patient-y is off the table.

I think many patient activists are by definition undervalued and their knowledge under-rated. I have spent my entire career working in and around health policy, health voluntary organizations, the NIH, AHRQ and the IOM. While not deep, my knowledge of the processes of medicine and health care and training and publishing, etc., is broader than many health experts and I am a good arguer and formidable patient representative. Just ask around.

Lisa: What have you done that has the greatest impact?

Jessie: To frame patient engagement as an equity issue.

Lisa: What are the mechanisms you use, such as speaking, writing, and social media, for communication and outreach?

Jessie: CFAH (my organization) has run the Health Behavior News Service since 1996. Working with the print, digital and broadcast media, we raise the visibility of new peer-reviewed research findings relevant to people making decisions about their health and health care. I did a lot of public speaking (20 to 35 speeches per year) until my most recent diagnosis. I maintain a daily curated Twitter feed on the topics of equity, evidence and engagement and have an active presence on Facebook and LinkedIn.

Lisa: What are the primary sources of satisfaction you experience related to your activism?

Jessie: Knowing that I’m right.

Lisa: What are the primary difficulties or frustrations you experience related to your activism?

Jessie: Knowing that it doesn’t matter whether I’m right or not to the people who are shaping health care today. Patient concerns are — rhetoric to the contrary — simply a low priority for the delivery of health care except for those deluded souls who believe that health care will be cheaper if we patients are more engaged, i.e., the more risk that can be shifted to us, the more likely we are to refuse expensive care. This isn’t going to happen and is also frustrating: being engaged in one’s care doesn’t mean compliance with it.

Lisa: What do you think could help non-activists voice their innovations and experiences on health care issues relevant to themselves or to government agencies or health-related organizations including the “patient voice”?

Jessie: I think a post-visit questionnaire like I get from OpenTable for every restaurant reservation would help people feel like they have an opportunity to contribute to change that matters to them.

The vast majority of us have no interest in changing “the system” or our hospital or even our clinic. We just want our doctor to call us back when we are worried about a rash from our new medication or get a prescription re-fill without having to go into the clinic again. Really – most people aren’t interested in being a patient voice. We want to get better and get back to our lives.

Lisa: What advice would you give to patients who are not currently activists?

Jessie: Find the right doctor or nurse practitioner to work with you. Negotiate a care plan that you can follow and if you can’t figure out how to check in with your clinician. Feel better.

Why should anyone aspire to become an activist? I would never encourage anyone to do so.

Lisa: What do you believe organizations could do to engage non-activists to provide feedback on and promote health care innovations?

Jessie: Who cares about health care innovations? Most of us are mostly healthy most of the time. Going to the doctor constitutes quite enough innovation, thank you. We don’t know what’s new and what’s old and it doesn’t concern us. We have other things to do, like work, play with our kids, go shopping, and fix the truck. We want experts — professionals — to use their expertise to help us get better. Expecting me to help health professionals to do their job more effectively unfairly presumes my interest, devalues my time and asks me to provide charity for them.

One of the biggest problems I have observed with those who are smitten with “the patient voice” is a tendency to want to rely on the least powerful and least educated involved in health care to solve their problems.

Lisa: How could organizations more effectively promote initiatives to patients?

Jessie: I don’t want an initiative. I want the right information and the right care and then I want to go home and not think about the doctor until I get sick again.

Lisa: What do you see as the ultimate measure of your impact in terms of the number of people you reach or the changes resulting from your work in people’s lives, in health policy, and in medical practice?

Jessie: There is no ultimate measure. My role is to represent a realistic view of what it is like to be a patient these days so that stakeholders who say they are interested in patient-centered care (or reforming care in the direction of serving patients generally) can respond to solid information/data rather than this odd collection of notions that all we need is a good pair of Jimmy Choo stilettos for our chemo treatment, and with our sense of social commitment intact, we’ll conquer even the most fearful, tedious, painful conditions, bend the cost curve and solve the problems that have eluded experts for all these years.

My role is not to find other stakeholders’ solutions. In a market economy, I am the customer.

My job as someone who wants people to be able to get better value from their health care is to describe what it now takes for me and my fellow patients to find good care and make the most of it: what barriers and limitations we face and what skills and resources seem to be required to overcome all those obstacles … and then ask/beg/beseech/make the case that the different stakeholders with their different domains of accountability and expertise address these deficits.

Lisa Gualtieri is an assistant professor, department of public health and community medicine, Tufts University School of Medicine, Boston, MA. She blogs at her self-titled site, Lisa Neal Gualtieri and can be reached on Twitter @lisagualtieri.