Inspiration From the 2017 NORD Summit

For those of us striving to bring patient centricity into all aspects of medical communications, there are few events as inspiring and galvanizing as NORD’s Breakthrough Summit. The summit, which was held in Washington, DC this week, is one of the few events that brings patients, academic researchers, and private industry together, on equal footing, to collaborate and share ideas. Being there together for two days had the remarkable effect of pulling us out of the silos of our everyday work and reconnecting us with the bigger reasons why we do what we do.

A NORD staffer noted the continued growth of the summit, with this year’s event having about a hundred more participants than last year and last year’s having about a hundred more than the year before. The large audiences engaged in every session and the heightened energy were impressive. (Our only regret of the summit: we wish more time had been set aside for audience Q&A, as almost every session ended with a line of people still at the microphones for their chance to engage the panelists.)

One of the most inspirational speakers was the amazing Maria Kefalas, who gave an incredibly moving talk about her work founding and leading the Calliope Joy Foundation. Even though her own daughter, Cal, was too late to receive a promising experimental gene therapy, Maria kept fundraising to send other children with leukodystrophy to Milan to be treated. Through cupcake sales and sheer force of will, the foundation raised more than $450,000 to establish a Center of Excellence at the Children’s Hospital of Philadelphia. Maria shared photos of some of the children who have benefitted from the foundation’s work. Her sadness at having Cal in hospice fully interwoven with her joy at being able to help others made a lasting impact.

PEP’s booth at NORD Summit

Equally inspiring—though considerably less emotional—was the high level of participation by senior members of the FDA. No less than 9 director-level members of the regulatory group were assembled for a fascinating panel discussion led by the always-engaging Dr. Robert Temple. Each of the panelists spoke clearly about the importance of patient input and involvement in their work and highlighted ways they hoped patients would be more engaged going forward. One striking example was when Wilson Bryan noted that academia and private industry have frequently had difficulty collaborating effectively and suggested that patient advocates be the ones to help bridge that gap by encouraging (or even demanding) better data sharing, especially of research results. This is an area we are working to support through PEPtrials, by ensuring patients remain at the center of all research activities.

Perhaps what most stays with us now that we’re home are all of the individual patients, caregivers, and advocates who took the time to share their stories with us. Each and every one of them amazed us with their knowledge of their condition, their ability to clearly articulate their past experiences and future hopes, and their determination to make a difference by helping others like them. We were impressed with the sheer number of great conversations we had and awed by their dedication. These are exactly the people we had in mind when we started PEPpartners, and we remain dedicated to giving them a platform that amplifies their voices.

The inspiring summit reminds all of us at the Patient Experience Project that there is so much work for us to do to make the vision of patient-centered healthcare a reality. It also provides us with ample evidence of how impactful and rewarding our efforts can be and why we should never grow tired of doing what’s best for the patient.