“For Our Voices to Count”

More than 45 people gathered in Chicago on June 16-17, 2017 as part of the Research CP Workshop to form a unique partnership that inspired optimism, hope and a vision of change for treatment and outcomes for people with cerebral palsy (CP). Twenty-four parents, caregivers and adults with CP joined with 23 doctors, therapists and researchers to discuss a prioritized research agenda for cerebral palsy.

A differentiator of the workshop is that it was inclusive of a broad range of people who have CP including those who use wheelchairs and are nonverbal plus parents and caretakers. Many traveled with assistance from all over the country to be there and it was the first time that they had had a chance to sit at the table with clinical researchers and be heard about what matters most to them about research.

“It was a great experience,” spelled Kathy Jo Pink on her Augmentative and Alternative Communication (AAC) Device, and she said what she learned she can take back to her housemates (who also have CP) about how the research will move forward.

Mother and personal attendant Diantha Swift added, “I came as a personal attendant for my 40-year-old daughter and I was struck that my voice was heard and I’m so glad that you have included the voices of adult and children who have lived the life of cerebral palsy — for our voices to count is overwhelming.” Swift is an elementary school principal and mother of Amanda who has CP.

For community members, the opportunity to communicate their desires and difficulties with some of the most respected clinical researchers in the field created a tremendous sense of empowerment and hope for the future. And for the passionate clinicians and researchers, the interaction with such a diverse set of community members living with CP enabled new insights and optimism for their work and research.

Unni Narayanan, M.D., an orthopedic surgeon at SickKids and the president of American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) remarked, “I came here to better understand the perspective of the people that we are ultimately trying to help. I have learned a lot. I’m very optimistic that we can use this process and this partnership to answer many of the questions we have considered here.”

Research CP, an initiative to set a patient-centered research agenda for CP, was created as a collaboration of CPRN and CP NOW, and partially funded through a Eugene Washington PCORI award. After running a series of webinars to establish a common language for members of the CP community and providers to discuss research ideas, a group of more than 180 members of this extended community participated in a research priority setting process through a collaborative survey platform. A subset of that community was invited to the Research CP workshop in Chicago to further hone the research ideas into an agenda. The preliminary findings from the Research CP process are posted on CPRN and the Research CP team has begun the process of writing a manuscript to document the outcomes from the initiative.

Paul Gross, the founder of CPRN, summarized the importance of the Research CP Workshop, “Research CP has altered the perspective of some of the top CP researchers about what matters most to the CP community – and will fundamentally change the course of CP research. For those who care for people with CP or live with CP, their ‘voices’ really do count.”