HCSRN'S COLLECTIVE EXPERTISE

There are many ways to partner with or involve patients in research. The HCSRN has excelled in the relatively recent shift toward conducting patient-partnered research, with nearly three dozen awards from the Patient-Centered Outcomes Research Institute (PCORI) since PCORI 's creation in 2011. 

Given that the HCSRN has amassed numerous insights and practical approaches to patient-partnered research, this page will grow and evolve to serve as a repository for those interested in collaborating with patients.  We invite you to contribute resources, join our Patient Engagement in Research Scientific Interest Group, or simply bookmark this page for future reference. 

 

A RANGE OF PATIENT PARTNERSHIPS

Collaborations with patients can take on many different formations in the context of a research study. Each study is different, and may benefit from occasional involvement of a Patient/Family Advisory Council, consultation at specific junctures of a study, or a steady, ongoing partnership with one ore more patient co-investigators.

 

PATIENT ENGAGEMENT RESOURCES

  • Patient Engagement Workbook - created by the Patient Engagement in Research Scientific Interest Group

  • Materials developed by the VA's Older Veterans Engagement Team include helpful tactics and approaches for engagement that are generalizable to other groups.  For example, the team has created an orientation manual for newly engaged participants, and an interview form to help pinpoint how participants are interested in contributing to research. If you are interested in these or other materials, contact us
  • You can also download a recent presentation from our friends at Patient and Family Centered Care Partners on engaging patients and families at the forefront of heallth care operations and research

  • Colleagues at Kaiser Permanente Washington Health Research Institute have had a longstanding interest in plain language in the research context, and have developed tools to support research personnel. The resources are aggregated into the PRISM Research Toolkit, a free, open access compendium that includes sample research consent forms and letters, a plain language vocabulary list for common research and medical terms, and background materials on the importance of recognizing and addressing health literacy.
  • PCORI has created a searchable repository of publications on engagement in health research, sortable by topic, phase of research, and type(s) of stakeholders involved in the research. 

  • Check back regularly for more materials, including presentations, tools, and resources that are specifically aimed at research partnerships based in health systems.

 

patients planning conference