Table 1 Descriptive details of patient and public involvement in included studies (see references [25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44])

Fit as a Fiddle; single arm

Stakeholders (n = unclear) Design, management, evaluation Volunteers (n = 4500) Management of classes and supporting roles Older people (n = 881) Evaluation

Health Literacy for Older Adults: Using Evidence to Build a Model Educational Program; single arm

Older people (n varied between 11 and 17) Design of workshop topics identified through needs assessment.

Usability of an adaptive computer assistant that improves self-care and health literacy of older adults; single arm

Older adults (n = 28) Evaluation of usability

The importance of health literacy in the development of ‘Self Care’ cards for community pharmacies in Ireland; single arm

Patients (n = 199) Evaluated self-care cards for 10 ailments

Teaching medical interviewing to patients: the other side of the encounter; single arm

Patients (n varied between 1 and 22) Design-to convert a medical student curriculum for medical interviewing for patients’ use

Impact of health literacy on outcomes and effectiveness of an educational intervention in patients with chronic diseases; RCT

Patients (n = unclear) Evaluate pilot test outcomes questionnaire

Health care provider-directed intervention to increase colorectal cancer screening among veterans: results of a randomized controlled trial; RCT

Older people (n = unclear) Design of the patient intervention to be administered by healthcare providers in two outpatient firms.

Implementation of a Standardised Health Education in a local context. A case study; single arm

Peers (n = 3) Management-sharing their experiences in health education programmes

Low health literacy as a barrier to medication adherence in patients with diabetes; single arm

Patients (n = 49) Evaluation of the project and written educational tool in easy-to-read language

Educational intervention for older people with asthma: A randomised controlled trial; RCT

Older people (n = unclear) Design of Patient Asthma Concerns Tool (PACT)

Outcomes of a breast health project for Hmong women and men in California; not-RCT

Hmong men and women, key community workers, advisory boards (n = unclear) Design of the culturally specific intervention-flipchart, video, and brochure Hmong women (n = 354) intervention

Enhancing health literacy and behavioural change within a tele-care education and support intervention for people with type 2 diabetes; single arm

Patients (n = 156) Evaluation only pre/post questionnaire and interviews about blood sugar control on selected sample.

Bridging the digital divide in diabetes: Family support and implications for health literacy; single arm

Patients (n = 75) Evaluation of website

Pharmacist intervention to improve medication adherence in heart failure: A randomized trial; RCT

Patients (n = unclear) Design patient centre instructions for the intervention Patients (314) intervention

Connecting for health literacy: health information partners (HIPs); single arm

Health Information Partners (HIPS) (n = 24) and Minority groups (n = 91) Design, management and evaluation of the outreach activities use

Effectiveness of educational interventions on asthma self-management in Punjabi and Chinese asthma patients: A randomised controlled trial; RCT

Patients, family and community groups (n = 35) Design of educational material Patients (n = 40) Evaluation of educational material

Coping with chronic lower back pain: Designing and testing the online tool ONESELF; single arm

Patients (n = 15) Design of website Patients (n = 748) Management and evaluation

Fotonovelas: A health literacy tool for educating Latino older adults about dementia; single arm

Members of the Alzheimer’s Association (n = unclear) Design of tool Ethnic older adults (n = 111) Evaluation

Merging health literacy with computer technology: self-managing diet and fluid intake among adult haemodialysis patients; single arm

Renal patients (n = 40) Design and evaluation to confirm previous findings and create their own interfaces

Kin KeeperSM: Design and baseline characteristics of a community-based randomized controlled trial promoting cancer screening in Black, Latina, and Arab women; RCT

Ethnic women (n = 514) Design-recruitment Community stakeholders (n = unclear) Design of studies, test and validate measure implementation of intervention