Enhancing Stakeholder Engagement in Pediatric Research: Applying a Health Literacy and Language Lens

Problem studied and importance
In order to have meaningful, equitable and long-lasting improvements in health outcomes, it is important that researchers work closely with patients and families as partners in planning and carrying out research studies. Information is needed on the best ways to work with patients and families as partners in research, especially how to involve patients and families who generally have not been partners in research in the past. This includes groups with lower levels of English proficiency or those who have trouble understanding health information, i.e., with low health literacy. Having these patients and families work closely with researchers on studies from start to end (including coming up with research questions, planning out and running studies and looking at study results) makes it more likely that findings from studies are helpful for families like them. This means research is done in a more equitable way, improving the health and well-being of underserved patients and families.

Study goals
Goal 1. Find out the best ways to reach, engage and support families who typically have not been involved in research. The study team will focus on patients and families with lower levels of English proficiency or lower health literacy levels.

Goal 2. Put together what was found about the best ways to engage families in research into a group or “bundle” of strategies, and test if studies who use this “bundle” are more likely to have patients and families be more involved in working with researchers compared to studies that involve families in studies in the usual way. The study team will also look to see if studies run better when the “bundle” is used (including having enough people join the study), and what kinds of things affect how the “bundle” was used and how well it worked.

Short summary of study design
Goal 1 – Part A. The project team will interview 40 people to learn about what they think are the best ways to involve patients and families as partners in studies. The groups to be interviewed will include parents and teenagers (including those with lower levels of English proficiency or who tell the study team that they have trouble understanding information about their health), leaders from the community, doctors, researchers and others interested in child health. The study team will use what they learn from these interviews and from the results of prior projects to come up with a list of the best ways to involve patients/families who usually do not participate as research partners.

Goal 1 – Part B. A group of 50 people will use the list developed in Part A to rank the best ways to involve patients and families in research projects. The most effective ways (or “strategies”) will be grouped together as a “bundle” and tested.

Goal 2. The study team will work with community partners and researchers to find 30 studies. Fifteen studies (Group 1) will get the “bundle” of strategies; the other 15 studies (Group 2) will not receive this “bundle.” All projects will be randomly assigned to one of the two groups, meaning that they will have a one in two chance in being in either group. The study team will then measure whether projects in Group 1 or Group 2 are more likely to have parents/patients working more closely with the research team. The study team will do so in several different ways with parents/patients, including through surveys, checking attendance at meetings, seeing how much parents/patients participate in projects and meetings, checking whether research materials like surveys and emails are written in a way that patients/families can understand and how well the different parts of the bundle are being used.

Who will use project results
Researchers who work on projects related to children as well as adults will be able to use the results of this study when they are planning future projects so they will know the best ways to include parents and patients as members of their research teams.

Stakeholder engagement
Parents, doctors, researchers, local and national community leaders and others interested in child health have helped plan the project, including how to best design the project, how the project will be run, how results will be compared and how to share study results.