Diving Deep with Patient Advocates

I’ve been a certified genetic counselor for over 20 years, working in pediatrics, general genetics, cancer genetics, and now as the CEO of my own company, My Gene Counsel. I have counseled thousands of patients and their families over these two decades, have run patient support groups, and have created and produced a podcast of patient stories.

At this point in my career I’m considered a seasoned genetic counselor. At this point, shouldn’t I know everything there is to know about patients?   No.

I continue to be reminded that patient care is complex and evolving. There is always more to learn. I’ve never been reminded of this more than in the patient advocacy community. There are different types of patient advocates. Some are health care professionals who advocate on the behalf of patients. The patient advocates I speak of in this blog are instead patients, who advocate on behalf of themselves, their families, and the greater community of patients – particularly of patients who have the same condition or predisposition.

Over the past 3 years I have become involved in several genetics advocacy communities, especially those associated with hereditary cancer. My immersion into these communities has taught me, and reminded me, of many valuable lessons.

1. We, as cancer genetic counselors, counsel patients on their risks, sometimes help them choose a surveillance plan and/or prophylactic surgery, and often see them through that procedure. We hope that our patients have avoided a cancer diagnosis, and that everyone lives happily ever after. This is not always the case.

We know this, of course, as health care providers, but being immersed in the advocacy community you really see the long-term impact of these risk-reduction decisions. Patients live with these major medical decisions for the rest of their lives. Many of them battle negative effects that can be associated with surgically induced menopause, plastic surgery, and reconstructive surgery. They carry scars, physical and emotional, of the testing process and the decisions that followed. Many of them are grateful to have had the chance to make an informed decision and to avoid a first, or subsequent, cancer diagnosis. But some of them feel that the resulting outcomes were not worth reducing the risk of cancer development – even if they feel guilty for admitting that. As health care providers we focus on the cancer risk reduction – and that is clearly important – but there is more to be measured here, including the impact on quality of life, emotional, physical, and psychological well-being. And quite likely there will be a trade-off for patients who choose these medical interventions – both short- and long-term. Patient advocates are there to remind us of this.

2. Genetics and medical care is personal for these advocates. Be careful what you say and how you say it.

Two of my advocate friends recently attended a medical conference and a well-known speaker scoffed that ‘prophylactic mastectomy is an easy surgery.’ Perhaps he meant that procedurally a mastectomy is an easier surgery than a colectomy or an oophorectomy, in that breast tissue is not near major organs that can be injured. These two advocates didn’t hear it that way. One of them has personally experienced a prophylactic mastectomy, and they both have worked with countless patients who’ve had these surgeries, some of whom have experienced difficult physical and/or emotional recoveries. This comment rubbed them as calloused, insensitive, and hard-hearted – particularly coming from a male physician who has no idea, on a personal level, of what these patients have experienced. Whenever you give a lecture remember: in this age of technology and social media, it is most likely that a patient is hearing, or will hear your words. In fact, he or she may be live tweeting them out.

3. Patients want to be treated like intelligent, respected partners. No one is more invested in forwarding the field than the advocates.

Gone are the days when it is acceptable to leave your patient sitting in the waiting room for hours, and then call them in and tell them how it’s going to be. Genetic counselors as a whole have never bought into this paternalistic style of medicine, but now even we have to up our games. Many of these patients are smart, they’re invested, and there is a pretty good chance that they’ve read the latest journal article before you have – welcome to the world of patient advocacy via Facebook, Twitter, and Instagram. Of course, most patients don’t have medical backgrounds and they will likely need help deciphering the information, but they are on top of their game and want to be considered partners in the decision-making process. We should treat them as such.

4. Speaking of forwarding the field — advocates want their data freed.

Patient advocates are smarter, savvier, and better informed than ever. They want their genetic data shared to benefit research and the care of other patients, and they won’t settle for anything less. Companies who have previously taken advantage of patient naivete beware: advocates are partnering and banning together to free their data. Don’t stand in their way.

Medicine is changing rapidly and patients are becoming partners in, and consumers of, health care. Are you creating a clinical trial? Developing a patient intervention or materials? Or starting a company in the health care sector? My best advice to you is to bring on patient advocates as your partners from the start. Their perspective is vital.

Ellen Matloff, MS, CGC is the President and CEO of My Gene Counsel. Ellen is the founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine. Ellen has authored more than 50 scientific publications in the field, is an established educator, lecturer and media spokesperson and has received national awards for her ongoing patient advocacy efforts. She is an outspoken patient advocate in many areas, most notably as a plantiff in the 2013 BRCA gene patent case that went before the Supreme Court in 2013. This decision has led to drastically lower prices of genetic testing, making it possible for more patients to afford this technology.

Ellen is also the co-founder of #GenCSM, Genetic Cancer Social Media, on Twitter along with Amy Byer Shainman and Georgia Hurst. 

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