iConquerMS: A Participant-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 iConquerMS, participated as Partner Networks in PCORnet.

PCORI funded iConquerMS’s participation in PCORnet from 2015 to 2018. This report outlines iConquerMS’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

iConquerMS is a PPRN focused on the needs of people with multiple sclerosis, or MS. MS is a disease that affects the brain and spinal cord. When people have MS, messages between the brain and body slow down, causing symptoms like muscle weakness, vision problems, trouble with balance and coordination, and difficulties thinking and remembering. No cure exists for MS, but treatments can improve symptoms and slow its progression.

Led by the Accelerated Cure Project for Multiple Sclerosis, iConquerMS connects people with MS, advocates, caregivers, doctors, and researchers. The primary goal of iConquerMS is to encourage and conduct research that reflects the priorities and concerns of people with MS. As of March 2019, the network included 4,920 people affected by MS. Partners Ogilvy and Ordinal Data, Inc., helped plan how the network would manage information and reach out to people interested in MS.

How does the network operate?

The iConquerMS network has enrolled 4,920 members. Of these, 80% are people with MS. The remainder are caregivers, family members, and others interested in MS. Information about patients for use in network research studies came from the patients themselves. They completed surveys and arranged for their health records and blood and other biological samples to be sent to researchers through the network or the Accelerated Cure Project for Multiple Sclerosis, which started a bank of MS biological samples in 2006. Patients gave their consent before this information was shared.

When people with MS signed up to join iConquerMS on its website, they took surveys that covered 

• Basic information, such as age, sex, occupation, and marital status
• When they were diagnosed
• Type of MS
• Overall health
• Quality of life
• Other health problems
• Physical activity
• Wellness and diet
• Abilities and disabilities

The information provided by network participants could be used in other research studies. Researchers submitted online proposals to request access to information that had already been collected from iConquerMS participants. They could also request permission to collect new information or biological samples like blood and saliva.

Network participants submitted their own ideas for research through the Suggest a Research Question feature on the network portal. A committee reviewed these questions, and all network participants could comment through online surveys.

How did the network involve patients and other partners?

The network is led by a Governing Board, Research Committee, and Engagement Committee. These committees include people with MS, patient advocates, patients, doctors, and researchers. People with MS hold a majority of positions in the network.

The Governing Board approved policies and procedures, provided guidance to the management team, approved nominations to committees, and endorsed committee recommendations. 

The Research Committee scored research proposals based on the input people with MS had in developing the research plan and its potential to improve the health or quality of life of people with MS. In most cases, the network surveyed participants about their interest in the study, likelihood of participation, and suggestions to improve the studies. The Research Committee also reviewed all ideas submitted through the Suggest a Research Question feature on the network portal.

The Engagement Committee was responsible for recruiting, engaging, and retaining people affected by MS in the network.

Each year, iConquerMS held a two-day leadership summit. This meeting brought together iConquerMS leadership, patients, caregivers, researchers, advocacy partners, and representatives from the pharmaceutical industry. The 2018 summit focused on how to strengthen the network through collaborations.

Who is in the network?

As of March 31, 2019, iConquerMS included 4,920 participants. The network participated in 14 research studies.

Network participants diagnosed with MS could also participate in Research Engagement About Life with Multiple Sclerosis, or REAL MS, the network’s main research project. This study looks at the real-life experiences of people with MS. Twice a year, participants completed online surveys, so researchers could see how MS changes over time. Participants also suggested ideas for future surveys and could write about their lives in more detail.

How does the network support future research?

In 2018, the National Multiple Sclerosis Society agreed to support the iConquerMS website for three years. The network is partnering with the pharmaceutical industry, medical societies, and universities to continue patient-driven research.

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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 iConquerMS, participated as Partner Networks in PCORnet.

PCORI funded iConquerMS’s participation in PCORnet from 2015 to 2018. This report outlines iConquerMS’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

iConquerMS is a PPRN comprising people affected by multiple sclerosis (MS). The network connects people diagnosed with MS, caregivers, clinicians, and researchers to advance patient-centered research. Led by the Accelerated Cure Project for Multiple Sclerosis, iConquerMS included, as of March 2019, more than 4,920 participants who contributed data, prioritized research goals, and participated in clinical studies. Of these, 80% are people with MS. The remainder are caregivers, family members, and others with an interest in MS. Network partners Ogilvy and Ordinal Data, Inc., helped develop the network’s engagement strategy and IT infrastructure.

Network Governance and Operations

Information about iConquerMS network participants for use in research studies came directly from the participants themselves. They completed surveys that generated data, which was stored in the iConquerMS database, and arranged for electronic health records to be uploaded to the database. They also sent biological samples to a biorepository under contract with the Accelerated Cure Project for Multiple Sclerosis. iConquerMS collected baseline data from participants when they registered in the network through its online portal and then collected longitudinal data every six months. The portal collects and manages data securely and is HIPAA-compliant. Registration surveys covered

• Demographics
• MS history
• Overall health
• Quality of life
• Comorbidities
• Physical activity
• Wellness and diet
• Abilities and disabilities

Sometimes the network asked participants for biological samples such as saliva, skin cells, and blood to be used in research. Participants supplied these samples through processes developed by the network and the Accelerated Cure Project for Multiple Sclerosis, which has maintained a repository of MS biosamples since 2006.

Researchers submitted online proposals to request access to previously collected data or biosamples from iConquerMS participants, or to collect new data or biosamples. Researchers have also requested the network’s help with patient engagement, including assessing the feasibility and importance of proposed studies.

Network participants submitted their own ideas for research through the Suggest a Research Question feature on the network portal.

Stakeholder Engagement

The network is led by a Governing Board, Research Committee, and Engagement Committee, all of which include patients, representatives from advocacy organizations, clinicians, and researchers. People with MS hold a majority of network leadership positions.

The Governing Board approved policies, procedures, and codes of conduct; provided guidance to the management team; approved nominations to committees; and endorsed committee recommendations. 

The Research Committee evaluated research proposals on criteria such as the input people with MS had in developing the research plan and its potential to improve the health or quality of life of people with MS. Network participants also evaluated research proposals by taking ad hoc surveys that asked about their interest in the studies, likelihood of participation, and suggestions for improving the studies. The Research Committee also reviewed all ideas for research submitted through the Suggest a Research Question feature on the portal.

The Engagement Committee was responsible for the recruitment, engagement, and retention of people affected by MS in the network. 

Each year, the network held a two-day leadership summit, which brought together iConquerMS leadership, patients, caregivers, researchers, advocacy partners, and representatives from industry to collaborate on iConquerMS’s organization, mission, and projects. The focus of each year’s summit depended on the stage of the initiative. The 2018 summit focused on expanding the network’s reach and impact through collaborations.

Demographics and Research Capacity

As of March 31, 2019, 4,920 people participated in iConquerMS. The iConquerMS network participated in 14 studies, including 5 observational cross-sectional trials, 1 observational prospective cohort study, 2 randomized clinical trials, 1 secondary data analysis, 1 qualitative research study, and 4 other types of studies.

Network participants also enrolled in Research Engagement About Life with Multiple Sclerosis (REAL MS), a longitudinal prospective study that is the network’s core research project. This study investigates factors that affect MS progression and treatment outcomes as well as the heterogeneity of MS experiences across populations. Study participants completed biannual surveys on the network portal and also contributed information about their lives and ideas for future REAL MS surveys through a free text feature.

Future Opportunities

The iConquerMS network has established several partnerships and collaborations to advance its future work. In 2018, the National Multiple Sclerosis Society agreed to support the infrastructure and operations of iConquerMS for three years. The network is partnering with industry, specialty societies, and universities to continue patient-driven research.