The COPD Patient-Powered Research Network

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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 the Chronic Obstructive Pulmonary Disease (COPD) Patient-Powered Research Network, participated as Partner Networks in PCORnet.

PCORI funded the COPD PPRN’s participation in PCORnet from 2015 to 2019. This report outlines the COPD PPRN’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

COPD is a lung problem that makes it hard to breathe. It often gets worse over time. Symptoms of COPD include shortness of breath, wheezing, chest tightness, and lack of energy. COPD affects at least 15 million Americans and is the third leading cause of death in the United States.

The COPD PPRN is led by the COPD Foundation, a patient advocacy organization that advocates and supports research to prevent and cure COPD and to improve the lives of all people affected by COPD. This PPRN includes partnerships and collaborations with partners at Kaiser Permanente Northwest and many other stakeholder and supporting organizations. The COPD PPRN includes an online registry of more than 7,400 participants who have COPD or who are at risk of COPD. All of the participants have agreed to share their healthcare information; link information from their electronic health records to the registry when available; complete surveys about their health and health care; and receive information about studies in which they might be able to participate. Researchers can use the COPD PPRN to quickly recruit patients for studies. People with COPD can also use the PPRN to share their experiences through surveys developed by other people with COPD and also to access educational information.

How does the network operate?

Both a Research Review Committee and Governing Board must approve all studies that want to use the COPD PPRN registry. The Research Review Committee includes four members, one of whom is a patient partner and is responsible for reviewing requests from people who want to use the registry. The Governing Board is led by five scientists and eight people living with COPD or caring for people with COPD. The board is responsible for approving all decisions about how the group operates, including a standard set of rules that the group follows, how to reach out to patients on the registry, what surveys they want to ask patients to fill out, and what topics about COPD are most important for them to study.

The COPD PPRN has an Advocacy Organization Advisory Board (AOAB), which provides guidance and support on how to reach out to the COPD community and expand the COPD PPRN; a Research Review Committee, which is responsible for reviewing outside requests for people who want to use the registry; a Nominating Committee; and the Industry Advisory Committee.

Outside requests for access to the COPD PPRN registry for research purposes must be unanimously approved by both the Research Review Committee and the Governing Board.

How did the network involve patients and other partners?

Partners of the COPD PPRN included patients, caregivers, family members, clinicians, healthcare professionals, industry representatives, and advocacy organizations.

Partners helped decide what topics were most important to research by reaching out to an online community run by the COPD Foundation, patient members of the Governing Board, and patients who are part of the registry. The partners also helped create and finalize the COPD PPRN policies and operating procedures, which specify the values of the group. Patients with COPD and caregivers of people with COPD also helped create rules about working with patient partners and gave feedback about the surveys used to collect information from PPRN participants.

In addition to being part of the Governing Board, partners were involved in all of the other COPD PPRN committees. For example, the AOAB included several advocacy organizations, including the American Association for Respiratory Care, the American Lung Association, the Personalized Medicine Coalition, and the Alpha-1 Foundation.

Patients and caregivers who enrolled in the COPD PPRN online registry received regular communications about ways they could be part of research studies. They also got information about chances to share their own experiences on a secure online community dashboard. Patients and caregivers also had access to an interactive online portal where they could see reports on their data and other COPD resources.

Who is in the network?

As of March 2019, the COPD PPRN had enrolled 7,407 participants with COPD or who were at risk of COPD into its online registry; it is continuing to enroll participants. The COPD PPRN collects data from these participants by asking them to fill out online surveys when they first join the network and then again on a yearly basis. The surveys include questions about participants, their daily lives, and their health. Additional surveys collect information on things like medicines and other treatments. In addition, it is possible for the COPD PPRN to link patient records in the online registry with patient data from outside sources, such as electronic health records or continuous positive airway pressure (CPAP) machines. While a Partner Network in PCORnet, the COPD PPRN participated in 17 studies.

How does the network support future research?

The COPD PPRN is part of the COPD Foundation, which has committed to maintain the registry and continues to enroll participants into the registry. The PPRN is also working with other PCORnet networks and research groups to help recruit patients for future studies on COPD.

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 the Chronic Obstructive Pulmonary Disease (COPD) Patient-Powered Research Network, participated as Partner Networks in PCORnet.

PCORI funded COPD PPRN’s participation in PCORnet from 2015 to 2019. This report outlines COPD PPRN’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

The COPD PPRN is led by the COPD Foundation, a patient advocacy organization that supports patient-driven and patient-centered outcomes research. The COPD PPRN is supported by partnerships and collaborations with Kaiser Permanente Northwest and many other stakeholder and supporting organizations. The COPD PPRN online registry includes more than 7,400 participants with COPD or who are at risk of COPD and who have agreed to share their healthcare information; link information from their electronic health records to the registry when available; complete surveys about their health and health care; and receive information about study opportunities. The COPD PPRN uses its online platform for study recruitment and to conduct studies. Researchers can apply to use the COPD PPRN platform to rapidly recruit targeted groups of patients and conduct studies collaboratively with the COPD Foundation and PPRN research staff. The platform provides a secure place for people with COPD to share their experiences through surveys developed by their peers. The interactive platform and email communications also allow participants to access COPD Foundation resources and educational information.

Network Governance and Operations

The COPD PPRN Governing Board is patient-led with eight patient or caregiver representatives and five scientific representatives. The Governing Board has regular communication with the research team and is responsible for approving all internal and external policies, including major network decisions, survey development, and research topic prioritization.

The COPD PPRN has an Advocacy Organization Advisory Board (AOAB), which provides guidance and support on how to reach out to the COPD community and expand the COPD PPRN; a Research Review Committee, which is responsible for reviewing outside requests for people who want to use the registry; a Nominating Committee; and the Industry Advisory Committee.

The COPD PPRN Research Review Committee and Governing Board review and approve all studies that use the COPD PPRN.

Stakeholder Engagement

Stakeholders helped outline the core principles of the COPD PPRN and develop and approve its standard operating procedures. Stakeholders included patients, caregivers, family members, clinicians, healthcare professionals, industry representatives, and advocacy organizations. Stakeholders also helped determine research priorities via the COPD Foundation’s online community, patient representatives on the Governing Board, and patient feedback from the COPD PPRN registry. Patient and caregiver members of the Governing Board also made changes to the baseline and longitudinal surveys used to collect data from participants.

In addition to the Governing Board, all the COPD Foundation and COPD PPRN committees include stakeholders. For example, the AOAB includes several advocacy organizations, including the American Association for Respiratory Care, the American Lung Association, the Personalized Medicine Coalition, and the Alpha-1 Foundation.

Participants enrolled in the COPD PPRN registry receive regular communications regarding opportunities to participate in research as well as opportunities to share their own experiences on a secure online dashboard. Participants also have access to an interactive participant portal where they can see custom reports with their information after completing the baseline survey, and they also have access to COPD Foundation resources.

Demographics and Research Capacity

As of March 2019, COPD PPRN enrolled 7,407 participants with COPD or who were at risk of COPD; it is continuing to enroll participants The COPD PPRN collects patient-reported outcome data through its online platform using surveys, which collect data on demographics, comorbidities, oxygen use, smoking history, health literacy, and social and economic information at baseline after enrolling; subsequent surveys collect longitudinal data on an annual basis. Other surveys collect supplemental data on medications and pulmonary rehabilitation. In addition, the network conducted pilot tests to add external data, such as data from electronic health records and continuous positive airway pressure (CPAP) machines, into the COPD PPRN platform.

While a Partner Network in PCORnet, the COPD PPRN has conducted one randomized controlled trial, six observational studies, two qualitative studies, one secondary data analysis, one retrospective study, and three pilot and other methodological studies. The COPD PPRN has supported recruitment and/or data collection for five randomized controlled trials (two funded by PCORI, one funded by industry, and two funded by NIH) and several other studies ranging from qualitative to pilot studies.

Future Opportunities

The COPD PPRN is an integrated part of the COPD Foundation, which has committed to maintaining the network. The PPRN is actively enrolling additional participants into its online registry. The network continues to partner with other PCORnet networks and external groups.