Being Unique Together

ChrisSnider_headshotEditor's note: Patient Advocate Christopher Snider was one of three ePatients who attended the recent Shared Decision Making Summit co-hosted by the Society of Decision Professionals and the Society for Medical Decision Making, and sponsored by Lilly, Merck and Kromite. After the Summit, we asked Chris to reflect on the value of the peer community in advancing health and health care. Actively supporting the idea that everyone has a story worth telling and every story deserves to be told, Christopher uses his podcast, Just Talking, and anonymous confession platform, My Disease Secret, to highlight stories and experiences from different patient communities. 

Finding Community

I only recently came around the idea that shared decision making is a legitimate perspective to have on the potential of health and health care. Granted, this journey is almost entirely influenced by my personal journey, and the disappointment and eventual empowerment that I discovered as I negotiated the relationships within my own health care team. For a person with diabetes, a typical health care team includes a primary care physician, endocrinologist, certified diabetes educator and sometimes a nutritionist. But for the first 12 years of my diabetes life, I never met with a certified diabetes educator. I met with a nutritionist the day after I was diagnosed with diabetes. My primary care physician was not a reliable source of diabetes information (by no fault of theirs, but sometimes there’s a reason specialists are preferred), and my endocrinologist was more interested in talking about his marathon running exploits than my diabetes management. So, rather than rely on a traditional health care team, I found solace, support and guidance from the Internet.

Finding the diabetes community, my peers, on Twitter, Facebook and personal blogs served as a tipping point in my own diabetes care. I faced bouts of diabetes burnout knowing I had the social support of people who had been there before. I pursued my first continuous glucose monitor after reading about the success and potential of this technology on diabetes blogs. By discussing my diabetes openly with others online, I felt empowered to find a new endocrinologist who would help me acquire my first insulin pump and certified diabetes educator that could help me make sense of all of the data at my fingertips. I had to take a roundabout journey to developing a modern health care team that would work with me to improve my diabetes management. I was at the center of this effort, deciding which direction to go next, including providers as necessary.

Despite this relative revolution in my diabetes care, my perspective on shared decision making remains skewed. As grateful as I am to have a team that works with me in true partnership and collaboration, the reality is the majority of my health care decisions happen independent of their input. I have the potential to make a new medical decision every five minutes as I weigh my blood glucose levels, insulin in my system and food intake. I cannot wait to consult my endocrinologist on how much insulin I should take for dinner. My certified diabetes educator cannot weigh in every time I need to correct for a high blood glucose reading. While I do my best to make the most of my scheduled appointments with my providers, the time spent with them - if we’re generous, we could say 2 hours a year - does not come close to the reality of my medical world. There is certain value in the shared decisions we make during those 2 hours - adjusting my insulin pump settings, for example, will certainly have an impact on my diabetes down the road. But the shared decision making opportunities I learn about from other patient advocates and enthusiastic providers are simply not realistic for the type of care I require.

Collaboration is Multi-Faceted

The reality is the patient is at the center of a much more complex web of communication and collaboration.

Information flows both directions from stakeholders and providers to the patient, and from the patient back to stakeholders and providers. Additionally, stakeholders and providers must work together to achieve ideal outcomes for all involved. The reality is much, much more involved than I ever truly recognized.

I’m not mad about this fact. If anything, it helps me celebrate the diversity and complexity of practicing medicine. No two diseases are alike in how treatment is approached. Further, no two patients will be alike in how they decide on a particular treatment or even how successful a particular treatment may be. I suppose the goal, then, should be a proper understanding of how shared decision making can be applied to any, and all patients, with a healthy understanding that customization is going to be required every step of the way. Together.

This idea of “together” means something different to me every day. Through my personal advocacy efforts, I’ve connected with patients and leaders in a variety of patient and health care communities. Across Twitter, Facebook, Tumblr and even podcasts, I learn from patients and providers in ways I never could have imagined five years ago, prompting questions like these:

  • How does all of this knowledge translate into advocacy?
  • How might these advocacy efforts develop credibility and sincerity within and beyond my own patient community?
  • Do my advocacy efforts build up enough credibility to be an advocate for an essential component of health care like clinical trials?
  • What does it take for me, an outsider, to properly promote the potential, and perhaps even the promise of clinical trials?
  • Is the goal to create believers in clinical trials right now or develop the potential for clinical trial interest in the future?

This last question is a specific challenge for someone my position. For me, clinical trials mean only one thing: “artificial pancreas.” But I’ve learned from other advocates about what clinical trials have done for them or other people they know. Because I value their opinions and perspectives, I’m more open to the potential of clinical trials. Maybe that means my own investigation of trials I may be eligible to participate in, or maybe that means I’ll be more likely to recommend clinical trials to one of my peers living with diabetes or in any other patient community. Regardless of how my participation may take shape in the future, I can comfortably say I’m more likely to believe in clinical trials because I’ve heard about it from someone I trust. That’s the value of this community. In order to increase awareness and understanding about what clinical trials are, and aren’t, we need to do a better job communicating these options to people who will listen to what we have to say. Not to sell our souls, but to encourage others to seek as much information as possible - perhaps in the landscape of clinical trials, too.

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