What is Patient-Centered Research? How do Patient Advisor Activities Fit Into CERTAIN?

The United States spends more money on healthcare than any other industrialized nation. And yet, in list after list, American healthcare is ranked at the bottom in measures of delivering safe, effective, and affordable care. Additionally, despite the huge amounts of money spent each year, most healthcare research is not effective in helping patients get better healthcare, because the system does not have a way to hear from patients and their doctors what information is important to have when making decisions about healthcare and treatment. CERTAIN is a program that helps doctors provide the care that patients need and helps patients be empowered and educated when making decisions about healthcare. CERTAIN talks to patients about the care they have received and gives that information back to patients and their doctors to inform discussions about healthcare decisions to improve the care received and outcomes experienced. CERTAIN actively works to include a wide range of voices and perspectives in all aspects of the research process – from development, to implementation, to dissemination and translation of study results.

The CERTAIN Patient Advisory Network is critical to the CERTAIN mission of ensuring that research aligns with issues important to patients and their caregivers. In particular, Patient Advisors help guide research teams to focus on the questions important to patients about their health, the important outcomes considered when making decisions, and how health and medical information is accessed and used. By sharing personal experiences with a specific health condition or healthcare delivery, Patient Advisors help research teams refine and improve research questions and study designs, including how study results are shared with the patient community and care providers.

CERTAIN Patient Advisors can get involved in a number of ways. Our Patient Advisory Board meets quarterly to provide input on our research programs and our approaches for supporting and involving patients as collaborators in our work. Patient research partners serve as members or consultants on specific research projects working directly with the research team throughout the life of the project – from selecting the research question to communicating the results. In addition to these activities, CERTAIN Patient Advisory Network members review research materials including patient surveys and research summaries for content and clarity as well as serve as speakers at CERTAIN events. The insight and passion Patient Advisors contribute to our work is greatly valued and critical to our continued commitment to improve healthcare in Washington State!

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Patient Voices First Annual Research Symposium

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.

Patient Advisory Network Director Danielle Lavallee, Research Symposium keynote speaker Deb Collyar, and meeting participantsThe 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.