Patients, and those who love and care for them, are integral to all phases of research. Patients and caregivers are members of PCORnet’s governance, participate on its committees, and provide valued input and leadership in all facets of the development and execution of PCORnet’s research efforts.
What does PCORnet mean by patient-centered research?
PCORnet’s patient-centered approach means that it:
Uses a research model that engages patients, caregivers, clinicians, and health systems as partners — alongside researchers — in the conceptualization, design, and conduct of studies and in the dissemination of results.
Prioritizes research that answers key questions that improve the ability to deliver appropriate care which leads to improved outcomes for individuals, communities, and their clinicians and healthcare systems.
Benefits for Patient Partners
This Patient Partnership Framework brings PCORnet’s mission to life and keeps patients at the center of everything this Network of Network does.
Patient Partnership Framework Goals:
Establish broad communication and connection with patient communities
Include patients at all levels of governance
Ensure patient partnership at all stages of research
Develop an evidence base around patient engagement
Provide technical assistance for patient partnership
Share best practices via patient partnership affinity group
Communicate study results to participants
Facilitate patient awareness of data uses
Deep Patient Involvement
Shifting patient roles from research “subject” to research “partner”
ADAPTABLE is a large study being conducted using PCORnet’s resources. Patient “Adaptors” are transforming the study by:
- Helping prioritize the research topic and design the protocol, consent form, study portal, and study materials.
- Disseminating study updates and results to other patients and the community at large.
- Actively participating in investigator meetings, the Steering Committee, and the Executive Committee.
Communicating research results to inform patient decisions
Results from the PCORnet Bariatric Study are helping patients make better informed decisions about their weight loss surgery options by:
Partnering with Smart Patients, an online community for patients, to make information about the study and its purpose available to a national sample of patients.
Communicating results to patients in a meaningful way, including efforts currently underway to integrate study findings into the development of strategies for Shared Decision Making.