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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

1. Create ways to involve patients, families, and caregivers in decision making about the network
2. Create a way to collect and share data reported by patients for research
3. Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
4. 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.

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.

How does the network support future research?

MoodNetwork has secured grants, contracts, and partnerships with federal funding agencies to continue its work.

Glossary

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.

Overview

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 toward the PPRN goals of developing and optimizing research and engagement infrastructure capacity to

• Establish a governance structure that fully engages patients and other stakeholders for the purposes of contributing to research
• Create a data infrastructure conducive to the ongoing collection of patient-reported data
• Meaningfully engage patients, caregivers, families, and community members in the research process, including identifying and recruiting participants for clinical trials and other research studies
• Lead or partner in the conduct of comparative effectiveness studies responsive to the research priorities of their communities

Network Infrastructure

MoodNetwork is a PPRN made up of people with mood disorders (a history of depression or bipolar disorder) as well as their support systems, such as parents, siblings, and caregivers. MoodNetwork’s goal was to improve the capacity to conduct comparative effectiveness research that reflected the questions most important to patients with mood disorders, advocacy organizations, and other stakeholders. The network built a data infrastructure to allow people to contribute data, view their own health information, and share their aggregate de-identified health information within and outside the network. MoodNetwork participants included more than 5,700 people.

Network Governance and Operations

MoodNetwork established four governing bodies, which included an operations committee tasked with overseeing all day-to-day operations; a stakeholder committee that gave feedback on items to be implemented by the operations committee; and a data management committee that oversaw data management. The steering committee oversaw these operations and data management committees. In addition, the steering committee was responsible for making key operational determinations, monitoring the progress of network recruitment, and directing network changes as needed. To maximize efficient decision making, these committees had overlapping membership. MoodNetwork’s governing policies included specifying majority voting rules for decision making, how to invite and vet new committee members, how to propose the creation of new committees, and how to use a centralized Institutional Review Board.

Stakeholder Engagement

Patient stakeholders co-chaired and served on all committees and contributed to major decisions, including developing MoodNetwork’s mission statement, website content, and research priorities and identifying new stakeholders. Patient stakeholders also helped develop the governance structure and all decision-making policies. In addition to patient stakeholders, 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.

MoodNetwork established procedures to ensure that patients are involved throughout the research process. Patients are involved in recruitment strategy development, recruitment material creation, measure and assessment selection, and online study platform beta testing. Patient stakeholders disseminated research results through blogs, newsletters, and social media posts. During committee meetings, the network asked stakeholders to share their opinions about projects and their suggestions about how to improve MoodNetwork. This feedback resulted in making blog posts public-facing instead of for members only, and in building a stronger social media presence.

Demographics and Research Capacity

MoodNetwork had 5,716 enrolled participants with mood disorders as of April 3, 2019. The network collected data on patient demographic characteristics and self-reported mood assessments through optional surveys on the MoodNetwork platform.

While a Partner Network in PCORnet, MoodNetwork participated in three clinical trials and one data repository study.

Future Opportunities

MoodNetwork has secured grants, contracts, and collaborations with federal funding agencies to sustain its infrastructure.