Public Can Now Participate in Patient-Centered Research Network
Health in Our Hands (HiOH), a patient community network andan initiative of REACHnet, has launched a free recruitment initiative for community members interested in participating in the advancement of clinical research.
“Traditionally, research has been led by doctors and researchers without the community or patient voice involved, even though this research is meant to help the patient community;” said Rebekah Angove, Engagement Director for REACHnet. “This network was created because we believe that patients are the experts on their own health. If the patient community can contribute their lived experience to this research, it will help researchers focus on issues that really matter to the community they are trying to impact. We’re thrilled to expand recruitment and look forward to working with our community members to advance health for all.”
Accessible via, anyone age 18 years or older may join the HiOH network. Members will receive messages by email or text message with updates on projects and dissemination of research results. The network is also a platform for members to share their perspectives with researchers through focus groups and advisory boards and to learn about opportunities to enroll in studies.
“I believe that it’s important to have a voice in health research, as well as healthcare delivery and innovations that will hopefully make our lives better. Ever since joining HiOH, I’m aware that I can impact health research and that my voice has power and influence. I feel like it’s my responsibility to participate in HiOH and to encourage my community to be involved as well,” said Edith Romero, a HiOH member.
The Health in Our Hands network is increasingly being used by health researchers to provide a patient voice to the research team and ensure projects are addressing the issues and outcomes most important to the community. The network can expedite the research process because researchers can use the network to efficiently collect data directly from patients.
Since 2015, HiOH has amassed a network of more than 3,000 active members. “We began by recruiting in clinic settings using tablets, and are excited to be expanding to a web-based sign-up. Now anybody can join!” Upama Aktaruzzaman, Health in Our Hands Program Lead.
Launched in March 2014 and funded by the Patient Centered Outcomes Research Institution (PCORI), REACHnet is a partnership between the Louisiana Public Health Institute, Ochsner Health System, Partnership for Achieving Total Health (PATH), Louisiana State University, Pennington Biomedical Research Center, University Medical Center New Orleans, Tulane University, and Baylor Scott & White Health. This collaborative partnership has increased the capacity to conduct comparative effectiveness research by building a health information technology infrastructure that provides access to comprehensive clinical data for more than five million patients in Louisiana and Texas.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at http://www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation's capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at http://www.pcornet.org.