For those looking to understand, design, and implement research collaborations between researchers and community members, patients, and other stakeholders, it can be hard to find detailed information about engagement methods and how they are implemented. But a new book, Researching Health Together: Engaging Patients and Stakeholders, from Topic Identification to Policy Change, was recently published to help fill that need. 

Emily Zimmerman, Director of Community Engaged Research at the VCU Center on Society and Health, invited project teams from the U.S., Canada, and the U.K. to describe the methods they use in participatory health research projects. The introduction covers types and history of stakeholder engagement in research, as well as issues of representation, the roles of different types of research partners, and ongoing challenges in the field. 

The text is organized into 5 parts, highlighted below with a sample chapter description for each part. With an emphasis on learning how to implement participatory health research, each chapter has a set of discussion questions that challenge readers to think of potential applications for the research methods.  

Part 1: Stakeholder engagement in research topic identification and modeling

Sample chapter: Williams, Hovmand, and Stange describe a community-based approach to group model building with stakeholders. They provide two case examples including the Paradox of Primary Care Study and the Racial Disparities in Breast Cancer Mortality and Treatment Study. Group model building with stakeholders allows for new ways to understand complex systems and identify opportunities to intervene.

Part 2: Stakeholder engagement in research design

Sample chapter: Dean, Friedman, Sutphen, Bourquardez-Clark, Duquette, and Rezende describe the ABOUT (American BRCA Outcomes Utilization and Testing) Network. ABOUT is a Patient-Powered Research Network (PPRN) that engages patients throughout the research process. Their approach to engagement includes a health registry, research collaboration, research advocate training, and research question development and prioritization. Their GAP360 tool is a stepwise patient-centered research process.

Part 3: Implementing stakeholder-engaged research

Sample chapter: Vargas, Palmer, Rouse Iniquez, Fleisher, Goette, Chicuata, Campbell Fine, Mar and Schmidt recount how community-engaged research helped spur successful policy on a soda tax in San Francisco.  A multi-stakeholder coalition brought together research, education, and advocacy. They identified local priorities, mapped social indicators, and gathered qualitative data on the needs and perceptions of residents.

Part 4: Stakeholder engagement in health and health systems interventions

Sample chapter: Zittleman, Espinoza, and Westfall show how Boot Camp Translation can help communities translate medical evidence and guidelines for faster community implementation. Developed by the High Plains Research Network, Boot Camp Translation has been used to promote uptake of guidelines for many conditions, including colorectal cancer screening, opioid use disorder, asthma, diabetes, and hypertension.

Part 5: Governance, evaluation, and ethics in stakeholder-engaged research

Sample chapter: Concannon describes the need for greater accounting of the impacts of stakeholder-engagement in research. He provides frameworks for identifying stakeholders and types of evidence and describes the evaluation questions that can be answered by different types of evaluations. An example stakeholder engagement plan is provided.