2013: A Building Year
We spent 2013 building up our network of Patient Advisors and getting them connected to the work of CERTAIN. We conducted outreach to many community organizations that serve patients in order to identify ways to collaborate. In addition, our Patient Advisory Network Steering Committee composed of 5 Patient Advisors continued to provide input on CERTAIN initiatives, identify areas where CERTAIN can better support the patient involvement in research, and provided support in new research development. The Patient Advisory Network Steering Committee met quarterly in 2013, and on October 31, hosted Ms. Deborah Collyar as a keynote speaker at the first annual Patient Advisory Network Research Symposium, to kick off discussions and planning for how the Patient Advisory Network can best support patient partnership in research in 2014 and beyond.
The October 31 Patient Advisory Network Research Symposium brought together 30 patients, researchers, and clinicians interested in working together to support patient involvement in research. Keynote speaker Deborah Collyar has been a leader in cancer patient advocacy since 1991, utilizing successful business, leadership and IT skills to bridge research gaps between science, medical providers and patients. She is the founder of Patient Advocates In Research (PAIR), an international communication network advocating the patient perspective in research. At the meeting, Ms. Collyar presented her perspective on the evolution of patient involvement in research drawing from her experience. The meeting agenda and Ms. Collyar’s slides are available on the CERTAIN website.
Moving Forward in 2014
The Patient Advisory Network Research Symposium kicked off a conversation that we will be continuing throughout 2014, namely – how can patient partnership in research be best supported, and what tools or resources are needed to support both patients and researchers in incorporating the patient perspective into research? With these questions in mind, we are launching a discussion board that we invite all Patient Advisory Network members, partners, and collaborators to provide input on. The discussion board has been seeded with two preliminary questions on which we would like your feedback, and we will be updating with additional questions for discussion over the next few months as conversation develops. Join the discussion today! (Click herefor guidance on registering for an account, or contact Sarah Lawrence with questions.)
The Patient Advisory Network Research Symposium kicked off a conversation that we will continue in 2014, namely how can we best support patient and researcher partnerships, and what strategies we can develop to break down barriers in communication and collaboration between patients and researchers. With these questions in mind, we are launching a discussion board that we invite all who are interested to provide input on. The discussion board has been seeded with two preliminary questions on which we would like your feedback. We will update with new questions regularly and share results and plans coming from the input received. Join the discussion today, and feel free to share with friends and colleagues who might also be interested.