Results Summary
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 Interactive Autism Network (IAN), participated as Partner Networks in PCORnet.
PCORI funded IAN’s participation in PCORnet from 2015 to 2019. This report outlines IAN’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
IAN aimed to improve the understanding and treatment of autism spectrum disorder (ASD) through research. ASD affects how people act and interact with other people, as well as how they communicate and learn. Led by the Kennedy Krieger Institute in partnership with the Simons Foundation, IAN included data for more than 59,000 people on the autism spectrum and their families.
| Title | Interactive Autism Network (IAN) |
| Network design | Patient-Powered Research Network (PPRN) |
| Lead partner | Kennedy Krieger Institute |
| Other partners | Simons Foundation |
| Population | 59,727 individuals on the autism spectrum and their families |
| Area(s) of focus | Autism spectrum disorder |
How does the network operate?
IAN’s network operations were put together by those who started IAN, including parents of children with ASD, the Kennedy Krieger Institute, and funders. Network operations included a Science Advisory Board (SAB) and a Community Advisory Council (CAC). The SAB guided the development and execution of key research and community activities. It consisted of six members from other organizations, including Autism Speaks, the Simons Foundation, the Kennedy Krieger Institute, and the Johns Hopkins School of Medicine. The CAC had 62 members from the ASD community and consisted of two teams. The first CAC team included parents of children with ASD, parents who care for adult children with ASD, adult siblings of people with ASD, and adults with ASD who live on their own. This team held quarterly conference calls focused on helping to shape IAN’s research agenda. The second CAC team included people who work in the ASD community, family members and caregivers, health professionals, and community advocates. This second team provided input on research topics and community articles through surveys, polls, and online focus groups.
How did the network involve patients and other partners?
People living with ASD, parents of children with ASD, family members of people living with ASD, and other caregivers work throughout the IAN network.
IAN built the IAN Community, an online resource for people with ASD and their families to learn about ASD research. The IAN Community helped people with ASD and their families to
- Understand the research process
- Keep up with the latest research findings, news, and events
- Understand the value of participating in autism research
- Influence the direction of research
IAN released questionnaires to collect patient, sibling, and caregiver data on various topics, such as social responsiveness and parental depression. In addition, IAN reached out to families to notify them of, and match them to, potential opportunities to participate in research studies.
Who is in the network?
IAN had 59,727 enrolled participants as of December 31, 2018. While a Partner Network in PCORnet, IAN participated in 10 studies.
| Population (as of 12/31/18) |
|---|
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Race/origin
Age
Sex assignment at birth
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How does the network support future research?
PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering patient and clinician engagement at all stages of the research process, participating in multinetwork PCORnet research, and building external collaborations. Going forward, IAN is partnering with SPARKforAustim.org, another autism network, funded by the Simons Foundation.
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.
Professional Abstract
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 Interactive Autism Network (IAN), participated as Partner Networks in PCORnet.
PCORI funded IAN’s participation in PCORnet from 2015 to 2019. This report outlines IAN’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
IAN aimed to facilitate research that advances the understanding and treatment of autism spectrum disorder (ASD). Led by the Kennedy Krieger Institute in partnership with the Simons Foundation, IAN included data for more than 59,000 people on the autism spectrum and their families.
| Title | Interactive Autism Network (IAN) |
| Network design | Patient-Powered Research Network (PPRN) |
| Lead partner | Kennedy Krieger Institute |
| Other partners | Simons Foundation |
| Participants | 59,727 individuals on the autism spectrum and their families |
| Area(s) of focus | Autism spectrum disorder (ASD) |
Network Governance and Operations
IAN’s governance structure was established by the network’s founders (parents of a child with ASD), lead partner (Kennedy Krieger Institute), and funders. This structure included a Science Advisory Board (SAB) and a Community Advisory Council (CAC). The SAB guided the development and execution of key research and community activities. It consisted of six members representing Autism Speaks, the Simons Foundation, the Kennedy Krieger Institute, and the Johns Hopkins School of Medicine. The CAC was composed of 62 members of the ASD community and consisted of both a primary and a satellite team. The primary team included parents of children or dependent adults with ASD, adult siblings, and independent adults with an ASD. This primary team participated in quarterly conference calls focused on prioritizing and shaping IAN’s research agenda. The satellite team represented a diverse set of ASD community stakeholders including family members and caregivers, health professionals, and community advocates. This satellite team provided input on research topics and community articles through a less structured setting, which included brief surveys, polls, and online focus groups.
Stakeholder Engagement
The IAN Community website provided a resource for people with ASD and their families to learn about ASD research. The IAN Community aimed to help people with ASD and their families understand the research process; keep up with the latest research findings, news, and events; understand the value of participating in autism research; and influence the direction of research. Based on research priorities proposed by researchers and the IAN Community, IAN released questionnaires to collect patient, sibling, and caregiver data on various topics, such as social responsiveness and parental depression. In addition, IAN reached out to families to notify them about, and match them to, potential research participation opportunities.
Demographics and Research Capacity
IAN had 59,727 enrolled participants as of December 31, 2018. While a Partner Network in PCORnet, IAN participated in 10 studies.
| Population Demographics (as of 12/31/18) |
|---|
|
Race/origin
Age
Sex assignment at birth
|
Future Opportunities
PPRNs follow PCORI standards to enhance the sustainability of the network, including fostering patient and clinician engagement at all stages of the research process, participating in multinetwork PCORnet research, and building external collaborations. Going forward, IAN is integrating with SPARKforAustim.org, another autism network, funded by the Simons Foundation.