Creating Sustainable Partnerships with Patients and Families in Research: General Resources

Creating Sustainable Partnerships with Patients and Families in Research: Selected References. Developed by the Institute for Patient- and Family-Centered Care.

Community Engaged Research YouTube Channel. Videos from the High Plains Research Network, University of Colorado, Denver Colorado.

Initiative to Support Patient Involvement in Research (INSPIRE): Patient-Centered Outcomes Research Community Workshop. Videos from a 2016 workshop convened by INSPIRE a project promoting research partnerships across the Pacific Northwest region. Also see Workshop Summary and Report.

Patient-Centered Outcomes Research Institute (PCORI). PCORI provides many videos about their funded research and partnerships in research through their Vimeo site and YouTube Channel.

Why I’m Involved: Stories from Patients Shaping Asthma Research. From the Asthma Evidence to Action Network (E2AN) project, Patient-Centered Outcomes Research Institute (PCORI).

Engaging Patients and Other Stakeholders: Guidance from the PCORI Engagement Rubric. A PCORI developed CME/CE tutorial on stakeholder engagement with interviews and activities.

Creating Sustainable Partnerships with Patients and Families in Research: Organizational Websites

Adolescent Health Initiative. Mission is to advance innovative adolescent-centered health care through practice improvement, education, research, and youth and community engagement.

Beach Center on Families and Disability. Based at the University of Kansas, this organization conducts research in partnership with individuals with disabilities and their families, professionals who provide services to them, and community representatives in which they live.

Canadian Institutes of Health Research. The Government of Canada’s health research investment agency with the mandate to excel in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products, and a strengthened Canadian health care system.

CERTAIN Patient Advisory Network's INSPIRE Research Portal. Online library of resources designed for patients and researchers partnering on patient-centered outcomes research (PCOR) and healthcare studies that actively engage patients in the research process from start to finish.

ImproveCareNow. Collaborative community where clinicians, researchers, parents and patients are empowered to bring about more reliable, proactive care for those living with IBD including working together to prioritize learning objectives and research questions, design and carry out studies, and implement the results.

Murray Alzheimer Research and Education Program. Innovative program that adopts a partnership approach and integrates research and educational activities in an effort to improve dementia care practices in Canada and around the world.

Patient Centered Outcomes Research Institute (PCORI). Created to help people make informed health care decisions and improve health care delivery by commissioning research that is guided by patients, caregivers and the broader health care community and will produce high integrity, evidence-based information.

Patient and Community Engagement Research (PaCER). A program based at the University of Calgary for patients and families interested in conducting research.

Planetree. Provides education and information in a collaborative community of healthcare organizations, facilitating efforts to create patient-centered care in healing environments.

Strategy for Patient Orientated Research (SPOR). A coalition of partners inclusive of patients and families dedicated to the integration of research in to care to ensure greater quality, accountability, and accessibility of care.

University of Maryland PATIENTS Program. Empowers patients to propose questions about their health care concerns and actively participate in studies to answer them.