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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 Patients, Advocates, and Rheumatology Teams for Research and Service (PARTNERS) participated as Partner Networks in PCORnet.

PCORI funded PARTNERS’ participation in PCORnet from 2015 to 2019. This report outlines PARTNERS’ 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

PARTNERS is a PPRN linking patients, family members, caregivers, researchers, healthcare providers, and other people interested in pediatric rheumatic diseases. Rheumatic diseases include juvenile arthritis, lupus, and other inflammatory diseases. The diseases can cause pain and affect the joints, bones, muscles, and other parts of the body. PARTNERS PPRN aimed to bring patient, family member, and other caregiver experiences to research about the diseases. Through PARTNERS, patients, family members, and other caregivers were able to share research ideas, work on proposals, and join study teams. PARTNERS PPRN brought together five organizations: The Arthritis Foundation, the Lupus Foundation of America, Cure JM Foundation, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN). PARTNERS included 21,812 members.

How does the network operate?

When the five organizations making up PARTNERS came together, they created a formal way to pool resources and expertise to bring patient and family perspectives into their research. They created plans to make sure studies protected patients. Plans also addressed how to use and collect data and how to enroll patients. The network also set up processes to communicate with participants and share research findings with patients, healthcare providers, and the scientific community.

Patients and caregivers served in a variety of leadership and committee positions in PARTNERS. These positions included providing overall leadership; advising on legal and ethical issues; overseeing operations; ensuring network diversity and community outreach; creating scientific priorities and the PARTNERS’ research agenda; and developing and evaluating specific disease management strategies.

How did the network involve patients and other partners?

PARTNERS invited patients, family members, and other caregivers to join committees overseeing leadership, outreach, communication, research, ethics, and data quality. More than half of the Steering Committee members were patients, family members, or caregivers. For each committee, new members received training and education specific to the committee for which they worked. A buddy system gave new committee members one-on-one support from members with committee experience.

Patients, family members, and other caregivers also represented the network in teaching and speaking events and served on working groups, including data security, outreach, communication, and research. In addition, patients and caregivers also helped with specific projects that came up. An example is the PARTNERS writing group, which consisted of family volunteers trained in translating scientific reports for the general public.

Who is in the network?

As of March 31, 2019, PARTNERS PPRN included 21,812 patients and community members. All members were originally part of one of the five partner organizations.

Patient members had been diagnosed with a pediatric rheumatic disease and agreed to share health information, receive personalized communication from PARTNERS, and provide medical data.

Community members said that their lives had been affected by a pediatric rheumatic disease and agreed to share their contact information, receive communication from PARTNERS, and take part in surveys.

While a Partner Network in PCORnet, PARTNERS participated in nine studies.

How does the network support future research?

Working with funds from CARRA, PARTNERS continues to foster patient and clinician engagement at all stages of the research process, participating in multinetwork research both as part of PCORnet and through other funding bodies, while also extending external collaborations.

Glossary

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 Patients, Advocates, and Rheumatology Teams for Research and Service (PARTNERS) participated as Partner Networks in PCORnet.

PCORnet funded PARTNERS’ participation in PCORnet from 2015 to 2019. This report outlines PARTNERS’ 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

PARTNERS is a PPRN linking patients, family members, caregivers, researchers, healthcare providers, and others interested in pediatric rheumatic diseases such as juvenile idiopathic arthritis (JIA), childhood-onset systemic lupus erythematosus (cSLE), and juvenile dermatomyositis (JM). PARTNERS comprises five independent organizations working together to pool resources and expertise with the goal of bringing patient, family member, and other caregiver engagement to the forefront of the research process. The organizations are the Arthritis Foundation, the Lupus Foundation of America, the Cure JM Foundation, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN). PARTNERS enrolled 21,812 participants via one of the five partnering network organizations and agreed to be contacted about research opportunities. Through PARTNERS, patients, family members, and other caregivers generated research ideas, collaborated on proposals, and joined study teams focused on pediatric rheumatology.

Network Governance and Operations

When the five independent organizations comprising PARTNERS came together, they created a formal structure to pool resources and expertise to bring patient and family engagement to the forefront and collaborate in the research process. This structure included centralized communications; data usage agreements; standardized data collection; streamlined regulatory compliance; efficient and accessible enrollment processes; and dissemination of research findings to patients, healthcare providers, and the scientific community.

Patients and caregivers serve in a variety of leadership and committee positions in PARTNERS. These positions include providing overall leadership; advising on legal and ethical issues; overseeing operations; ensuring network diversity and community outreach; creating scientific priorities and the PARTNERS research agenda; and developing and evaluating specific disease management strategies.

Stakeholder Engagement

PARTNERS recruited patients, family members, and other caregivers to engage in PARTNERS’ governance by serving on committees overseeing leadership, outreach, communication, research, ethics, and data quality. As of March 2019, the committee members held more than half of the Steering Committee seats and represented the network in teaching and speaking engagements. PARTNERS provided new members with training and education, including mentoring by an experienced committee member. Mentoring included training to serve as the point of contact for research projects.

Patients, family members, and other caregivers also served on working groups addressing ethics, data sharing, outreach, communication, training, research, data quality, and learning health systems. In addition, patients and caregivers worked on ad hoc groups that were formed to provide a specific task for the PARTNERS PPRN. An example is the PARTNERS writing group, which consists of patient family volunteers trained in translating manuscripts into summaries for consumer audiences.

Demographics and Research Capacity

As of March 31, 2019, PARTNERS PPRN enrolled 21,812 patient and community participants via their affiliation and enrollment with one of the five partner organizations.

Patient participants had been diagnosed with a pediatric rheumatic disease and agreed to share person-level, de-identified data; receive personalized communications such as emails, newsletters, and lay summaries from PARTNERS; and contribute patient- or physician-derived medical data.

Community participants self-identified as being affected by a pediatric rheumatic disease and agreed to share contact information, receive communication from PARTNERS, and participate in surveys.

While a Partner Network in PCORnet, PARTNERS participated in nine studies, including a large clinical trial, five qualitative studies using focus groups, and three descriptive studies using surveys.

Future Opportunities

Working with support from CARRA, PARTNERS continues to foster patient and clinician engagement at all stages of the research process, participating in multinetwork research both as part of PCORnet and through other funding bodies, while also extending external collaborations.