Archive for January, 2014

Lessons in Patient Advocacy: Getting Off to the Right Start

January 5th, 2014

Like many patients and patient families who have lived with a serious or chronic condition for a period of time and have arrived on the other side of the shock of diagnosis, the confusion of new terminology, and the arduousness of treatment I came to the point in my journey when the decision presented itself – try to go back to living the life before or reorient my life to figure out how to help other patients. Neither decision is wrong, in fact, I have tried living a life where there was no reference to my medical conditions, but that just never seemed the right choice for me, for my purpose and place on this planet.

For almost two decades now I’ve worked in healthcare, primarily working for, with, or advising others how to work for or with patient advocacy organizations.  This year I am embarking on something new, and I’d love for you to go with me.  I am launching a new nonprofit, building it from the ground up.  Over the course of this year I will write about my process for creating a patient advocacy organization, the sources I use, the best practices I leverage, and the lessons I learn from my inevitable mistakes.

And I’d love to hear your thoughts from your own experience, in fact I make an urgent plea for them!

Lesson 1: Am I filling a need? Am I the best person/organization to fill it?

I’m not the first patient to think, “I’ll start a foundation!” However, we all know what road is paved with good intentions.  There are thousands of health-related 501(c) 3 organizations, most quite small.  Some do amazing work.  Some though, if we were to be honest, do not accomplish much and create confusion in the disease landscape, and steer resources from other organizations which are or could actually make a real impact.  So my first step in creating a new patient advocacy organization was to try to have people talk me out of creating it.  I asked as many different types of stakeholders in the relevant disease state – other patients, clinicians, researchers, companies, and people who knew nothing about the disease – the same questions:

  1. What is most needed in this space?
  2. Is another organization planning or equipped to meet this need?

In my case (and yes in future posts, I will tell you what disease), I was told repeatedly (and in some case emphatically) that there were no organizations that were poised to meet several crucial and clear needs to advance the field and improve the lives of patients and there were specific ways that my background, experience, connections and expertise matched those needs.  My choice is not an indictment of other organizations.  It makes a lot of sense to focus on developing a particular expertise so that one organization may end up being the go-to for support, another for research funding, and another for advocacy.  Where problems arise is where there is mission or operational overlap and an organization is not providing a unique value to the community. If the answer had been otherwise I would have joined one of the organizations.

Too few patients/patient families go through this step, or  are willing to put ego aside if they do, resulting in unnecessary fragmentation of the advocacy landscape.   In fairness, some patients/patient families are also rightly turned off by the bureaucracy or staff capture of some of the larger organizations and want to make sure that their efforts and dollars are used in a highly specific way or more directly on patients.

Question 1: Why did you start your organization? What specific need were you trying to meet?

I look forward to this dialogue throughout 2014!

Thank you,