PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.
Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including MoodNetwork, participated as Partner Networks in PCORnet.
PCORI funded MoodNetwork’s participation in PCORnet from 2015 to 2019. This report outlines MoodNetwork’s achievements in building its research infrastructure capacity to
- Create ways to involve patients, families, and caregivers in decision making about the network
- Create a way to collect and share data reported by patients for research
- Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
- Lead or join in research studies that focus on the community’s priorities
Network at a glance
MoodNetwork is a PPRN that includes people with mood disorders, such as a history of depression or bipolar disorder, as well as their support systems, such as parents, siblings, and caregivers. MoodNetwork’s goal was to make it possible to research the questions and topics most important to people who have mood disorders. It also aimed to make it possible for people with mood disorders to contribute data to research, view their own health information, and share their de-identified health information in and out of the network. As of April 2019, MoodNetwork included more than 5,700 people with mood disorders.
|Patient-Powered Research Network (PPRN)
|Massachusetts General Hospital
|Area(s) of focus
|Mood disorders (depression or bipolar disorder)
How does the network operate?
MoodNetwork set up four committees to run the network. A steering committee oversaw other committees on day-to-day operations and data management. The steering committee also oversaw operational decisions, network recruitment, and network changes. These committees had overlapping membership to help make decision making easier. In addition, the network wrote policies outlining how to invite new members to work on committees, how to propose creating new committees, and how to work with an Institutional Review Board, or IRB. An IRB is a group that follows federal regulations, state laws, and institutional policy to review, monitor, and approve research in order to protect the ethical rights and privacy of the subjects involved.
How did the network involve patients and other partners?
Patients with mood disorders helped lead each of the MoodNetwork committees, except for data management. These patients helped make major decisions, including writing MoodNetwork’s mission statement, deciding what to include on the MoodNetwork website, ranking research topics, and finding new people to get involved. Patients also helped develop the network’s decision-making policies. Committee members also included representatives from the Anxiety and Depression Association of America, the Depression and Bipolar Support Alliance, the National Alliance on Mental Illness, and the International Bipolar Foundation.
Patients helped throughout the research process, including developing ideas for how to recruit patients, giving feedback based on their own experiences, and helping to test materials before studies began. Patients also helped get research results to the public through blogs, newsletters, and social media posts. During committee meetings, patients gave feedback on projects and suggestions about how to improve MoodNetwork. For example, patients suggested making blog posts available to the public, instead of only being available to MoodNetwork members.
Who is in the network?
MoodNetwork had 5,716 enrolled patients with mood disorders as of April 3, 2019. The network collected information from patients about their age, gender, and mood through optional surveys on the MoodNetwork website.
While a Partner Network in PCORnet, MoodNetwork participated in four studies.
|Population (as of 04/03/19)
- 81% white
- 6% mixed race
- 5% Asian
- 3% black or African American
- 1% American Indian/Alaska Native
- 3% no information
- 56% 18–44 years
- 37% 45–64 years
- 7% 65 years or older
Sex assignment at birth
- 77% female
- 20% male
- 1% other
- 2% no information
- 7% woman
- 2% man
- 90% no information
How does the network support future research?
MoodNetwork has secured grants, contracts, and partnerships with federal funding agencies to continue its work.
Institutional Review Board (IRB): A group that follows federal regulations, state laws, and institutional policy to review, monitor, and approve research in order to protect the ethical rights and privacy of the subjects involved.
Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.
PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.