The National Health Council’s 27th Annual Voluntary Health Leadership Conference

Date: 03/13/2014

The 27th Annual Voluntary Health Leadership Conference, held February 12-14, in Tucson, Arizona, brought together nearly 80 senior staff and volunteer leaders from 32 of the National Health Council’s (NHC) member patient advocacy organizations – the highest attendance in the history of the conference in spite of the snow storm that hit the Midwest and East Coast states. FIRST Executive Director, Jean Pickford, was among the many advocacy leaders in attendance.

Topics explored during the three day conference included:

Jean enthusiastically reported that she was inspired by ideas both presented and generated at the conference, in many critical areas including best practices for sustainability and growth for patient advocacy organizations. Here is a brief look at her key takeaways from the event:

Jean Pickford with Myrl Weinberg, Chief Executive Officer NHC

What topics did you find particularly relevant to the FIRST organization?

Many of the member organizations have much larger budgets and staff compared to FIRST. It was a privilege to sit amongst the leaders of these well-respected national patient advocacy groups and learn their tricks of the trade. Three main topics emerged from the meeting: innovation, commercialization, and best practices for navigating the new healthcare marketplace. We must constantly be looking for ways to connect with our constituents and provide them with the best and most accurate information. Investing in physician-scientists who are paving the way for translational medicine is a major priority for most organizations. I was proud to say that FIRST is doing all of this, plus more!

Was there something you learned that you will be able to implement at FIRST in the near future?

I learned some new tactics to evaluate our infrastructure to accelerate our mission. Non-profit sustainability is a mix of fulfilling your mission and financial stability. When looking at our most significant programs, I need to make sure that I can confidently tie it back to our mission. If not, it must be re-evaluated and/or eliminated.

What was your biggest “take away” from the conference?

It was refreshing to see that no matter the size of your organization and disease prevalence, every organization faces the same challenges and triumphs. One CEO stated that we should not call our constituents “patients,” but refer to them as “impatients,” because they are the people who are our biggest motivators to make things happen. Nonprofit leaders are a unique group of professionals; we are all striving to make the lives of our constituents better, while trying to run a business so we can make it a reality.

Has your membership to the NHC influenced your perception of possibility, with regard to the growth of FIRST, research, and/or patient advocacy, for the future?

No, because I already knew the future has so much potential. Science is constantly emerging. New discoveries are being revealed at a rapid pace. Technology is allowing organizations like FIRST to connect with patients, physicians, and scientists all over the world. Science and technology are changing the study of diseases in profound ways and FIRST will continue to support whatever it can do to make a difference.