Developing a protocol for Patient Public Involvement (PPI) Health literacy research  

Background:  

Patient/Public Involvement (PPI) in health literacy research is crucial to prioritise meaningful  research that addresses the needs of patients and the wider community. The National Institute for Health Research (NIHR) defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, carers, and members of the public with researchers that influences and shapes research. Low health literacy tends to be concentrated among people with poor health status, high healthcare use, low socio-economic status, lower education, and older people (Sørensen et al., 2015). Therefore, it is crucial that these populations are reached.  Including populations served in the design, implementation and evaluation of health information and services  is a key attribute of a health literate or responsive organisation according to the American Institute of Medicine (Brach et al, 2012).  Similarly, the WHO draft roadmap (WH0, 2019) has highlighted the importance of organizations to develop their health-literacy-responsive services and information systems and initiatives for targeting vulnerable or disadvantaged groups.  

Aim: The aim of this research is to develop a protocol for developing PPI capacity for marginalized community members to contribute to developments in health literacy research at a local level.  

The study will work with members of an adult literacy group to identify research priorities for a local hospital-based health literacy committee. This group will also act as members of a stakeholder group to address health literacy needs in the wider community, along with community and health service representation.  They will have the opportunity to comment on and co-produce a protocol for PPI for health literacy research. This will include comments on the mechanisms used to bring together health service and community stakeholders. 

Participants will have the opportunity to attend two workshops to provide information on health literacy, PPI and stakeholder group involvement. 

A rapid appraisal process evaluation will be undertaken to determine the acceptability of the process for adult literacy users.