Patient and public involvement in health literacy interventions: a mapping review

PLAIN ENGLISH SUMMARY: If people can read, understand and act on health information to better their health and reduce illness, they are thought to have “adequate” health literacy. Poor health literacy can mean people are less able to access health care and manage their health. Health literacy tends to worsen as adults get older, and is especially poor in adults age 65 and over. Ideally, health literacy interventions target people before age 65, to establish good skills and habits before people have many health problems associated with ageing. It is also good if researchers consult ordinary people, including patients and the public (PPI) when planning a programme to try to improve health literacy. This may help ensure individual needs are catered for. We therefore looked for studies that described any role of patient or public representatives in the research planning stages. We explored how the representatives contributed to each project. We found only 20 studies that included people other than the research team. Lack of reporting and consultation with patient and public representatives may contribute to less success when public health programmes are undertaken. ABSTRACT: BACKGROUND: Health literacy is the ability to understand, access and use health care and is a critical mediating factor that affects the health of older adults. Patient and public involvement in health and social care research, policy and design of care delivery is one mechanism that can promote production of better health literacy. This mapping review looks for and describes practices, concepts and methods that have been reported involving patients and public in the development and design of health literacy interventions for older people. METHODS: Studies for the present review were selected from an inventory of health behaviour studies published between 2003 and 2013. The inventory was created by systematic searches on bibliographic databases (Medline, CINAHL, Scopus, Google) for health literacy interventions involving older people (50+ years) and resulted in screening of 5561 articles, of which 1097 met study inclusion criteria. For the research described in this article 96 of the 1097 studies specifically focused on health literacy and were independently screened by two reviewers to assess involvement of stakeholders other than investigators and participants. RESULTS: Twenty studies included patient and/or public involvement in at least one research domain: design, management or evaluation. Involvement included volunteers, older people, patients, and/or community representatives. CONCLUSIONS: Patient and public involvement were rarely reported in studies on health literacy interventions for older people. Future intervention development needs high quality PPI, which is well reported to develop the evidence base and inform practice.