Patient public involvement (PPI) in health literacy research: Engagement of adults with literacy needs in the co‐creation of a hospital‐based health literacy plan

Abstract Background People with literacy needs can experience many challenges in accessing, understanding and using health services and health information. Such challenges can adversely impact patient‐provider interactions and ultimately, health outcomes. Healthcare providers need to be aware of health literacy (HL) to address the demands of healthcare systems, improve their interactions with communities and patients and promote patient engagement for improved health outcomes. Methods This paper reports on a process of patient and public involvement (PPI) with participants in an adult literacy programme acting as PPI contributors to identify priority areas for a local hospital HL action plan and to develop a protocol for a PPI process with other groups. A qualitative community‐based participatory research study design informed by principles of PPI was undertaken, drawing on the tools of participatory and visual methods, open discussion and workshop format to facilitate a process of co‐creation. Three workshops with six PPI contributors took place to identify issues to be included in the hospital action plan. PPI contributors identified issues and grouped these into priority areas using discussion and ranking procedures. Results Key areas prioritised for HL action by the PPI contributors were: verbal communication, emphasising the patient's right to understand, and improved understanding of medication use. These were incorporated into the action plan. The workshop format and process were deemed acceptable to the group and input on improvements will be incorporated into further work in this area. Conclusion PPI acts as a lever in the knowledge translation process. Genuine engagement with service users can meaningfully contribute to relevant and sustainable changes to services as well as foster the empowerment of service users. Patient or Public Contribution Members of the public with literacy needs actively participated in the co‐creation of a HL action plan for a local hospital and in the development of a protocol for a patient and public process for HL research.


| INTRODUCTION
Health services are complex, and many individuals experience barriers to accessing and navigating these services. For individuals with established literacy needs, the potential for challenges is even greater. 1,2 It is increasingly acknowledged that healthcare organisations progress their responsiveness to such issues through system and practice improvements. [3][4][5] Literacy involves understanding, evaluating, using and engaging with written text to participate in society, achieve one's goals and develop one's knowledge and potential. 6 Health literacy (HL) is linked to literacy and represents the personal knowledge and competencies that accumulate through daily activities, social interactions and across generations. 7,8 Crucially, the World Health Organization (WHO) emphasise that such knowledge and competencies are mediated by both organisational structures and the availability of resources. These enable people to access, understand, appraise and use information and services in ways that promote and maintain good health and well-being for themselves and those around them. In addition to the direct challenges posed by literacy needs, the associated stigma can also impair patient-provider interactions and ultimately, health outcomes. 9 In Ireland, 17.9%, or one in six, adults are at or below level 1 on a 5-point level literacy scale, and approximately 40% have limited HL. 6,10 Healthcare providers need to be aware of HL to address the demands of healthcare systems, improve their interactions with communities and patients and promote patient engagement for improved health outcomes, behaviour change and treatment concordance. 11,12 The link between limited HL and health outcomes is well established. These include greater mortality, poorer overall health status, increased hospitalisations and emergency care use. [13][14][15][16][17] In relation to limited HL and specific diseases research highlights, for example, associations with worse asthma severity, poorer diabetic control and obesity. 13,15,16 Those with limited HL are more likely to be from disadvantaged backgrounds with lower levels of educational attainment, be older and from ethnic minority groups. 18 Nevertheless, HL is found to be a stronger predictor of health outcomes than race/ethnicity, income, and education. 13,19,20 Strengthening HL at a population level and making health services more accessible to those with low HL may be a useful strategy to reduce disparities and promote greater equity in health. 21 Community-based participatory research CBPR emphasises the importance of creating partnerships with the people for whom the research is ultimately meant to benefit. 22 With a track record of approximately 25 years, CBPR has established its effectiveness in reducing inequities with its adherence to principles of co-learning and health equity actions. 23 The approach is closely aligned with 'user-led' research. 24 More recently the value of patient and public involvement (PPI) in health and social care research services is increasingly recognised. 25,26 PPI in research is defined as 'research being carried out 'with' or 'by' members of the public, rather than 'to', 'about' or 'for' them'. 27 PPI is based on the principle that healthcare should be person-centred, involving patients and the public in the design, conduct and dissemination of research and improvement work. 28 It involves the co-production of health care through the use of active partnerships between patients and/or members of the public and researcher. 29 Furthermore, PPI in health and social care research, policy and care delivery design is a mechanism that can promote the production of better HL. 30 It builds on a growing interest in collaborative approaches to knowledge generation between knowledge users and researchers and that lead to 'co-created' knowledge. 31 PPI is underpinned by normative values associated with empowerment; change/action; accountability/transparency; rights and ethics. 32 These values clearly align with the focus of HL on empowering individual citizens to demand rights and quality services and enabling engagement in collective health promotion action. 33  quality improvement of existing health information leaflets and booklets; and, hospital navigation evaluation using walking interviews with service users. While the committee included patient representation from its inception, the co-creation of an HL plan with people with limited literacy has the potential to more meaningfully address their needs and those of all service users. This project sought to begin the process for ongoing PPI between PPI contributors, researchers and practitioners.
The purpose of this work was to engage people with literacy needs in the co-creation of a hospital-based HL plan. The objectives included: raising awareness of HL with recipients of adult literacy classes, introducing them to PPI and the Health Literacy Committee (HLC), exploring their experience in using health services, prioritising issues to include in the HL action plan, and identifying opportunities for further PPI contributions.

| Study design
A PPI approach was used within a CBPR study design. Specifically, this study drew on the tools of participatory and visual methods, open discussion and workshop format to facilitate a process of co-creation.

| Sample
Purposeful sampling was undertaken to identify persons attending adult literacy classes who could participate as PPI contributors. The Director of a local Adult Basic Education Service (ABES) provided expertise on the logistics of working with the PPI contributors. Initial dates coincided with increased Covid-19 public health restrictions which resulted in delays as contributors were not available for online participation. The sample size was also impacted by Covid-19 as the number of participants was restricted due to public health guidelines and room size requirements. Information sheets for potential contributors were drawn up which adhered to Plain English guidelines. These were distributed through the ABES by the Director. A total of six individuals (one male and five female) were available and willing to contribute. Feasible dates and times for the workshops were agreed upon with contributors through the ABES Director. In keeping with PPI guidelines contributors were provided with payment (in the form of a voucher) to offset the time given and basic travel expenses. All workshops took place at the ABES premises. 26 Analysis was undertaken through engagement throughout the process. PPI contributors identified issues and worked together with the facilitator to group and prioritise these issues. The PPI contributors were involved in creating meaning from the data through the ranking process and group discussions.

| Ethics
An Independent ethical review of the work was undertaken, and ethical approval was granted through the University of Galway Research Ethics Committee (2021.01.011) on 26 January, 2021.   transcribed the issues, and rankings received to one list to be discussed at the next workshop.

| Workshop 3
Results of the ranking process were discussed in more detail with three issues agreed on by the group of contributors based on the rankings received. These were: 1. Verbal communication.
2. Right to understand.
3. Help to fill out forms. Help to fill out forms encompasses help with navigation.
All of these decisions were brought to the HLC by V. McK. and incorporated into the hospital's 2022-2027 action plan for HL (see Table 2).

| DISCUSSION
Findings in this paper address both the organisational and community factors that affect HL. 35 The development of an action plan contributes to reducing the complexity of the health system and improving how information and services are provided in a meaningful way. This paper draws on the principles of PPI to engage people with literacy needs in the co-creation of a hospital-based HL action plan and to develop a preliminary protocol for similar work with other groups based on the advice of the PPI contributors. It reports on the preliminary instigation of a PPI partnership for initial planning. Further, ongoing work will include PPI contributors working on implementation and evaluation activities.
Embedding PPI at this early stage will support PPI sustainability in the long term for health literacy research with the HLC. This paper set out a pilot process for engagement with adult learners with literacy needs to T A B L E 2 Issues raised by contributors (in italics) mapped to action plan.

5-year action plan for Health Literacy Committee
Health Literacy Committee Continue with established committee, with expanded staff and patient representative membership Identify Health Literacy Champions within the hospital Improve governance structures and build on reporting relationships Raise awareness of 'Working with Patients with Limited Health Literacy' Massive Open Onine Course (MOOC) Continue to implement training plan on interpersonal skills and plain English writing.

Verbal communication
Increase/embed awareness of literacy needs among service users Improve verbal communication with service-users using explicit, evidence based and evidence informed health literacy communication techniques Implement rolling campaign focusing on improving verbal communication and emphasising the patient' sright to understand.

Written patient information
Update the Policy on the Development of Written Patient Information (2017) and improve access and awareness of the policy Streamline governance and work-streams for staff producing written patient information Continue to improve quality of existing written patient information and ensure changes are maintained Implement process for user testing new materials with service users.

National Inpatient Experience Survey and discharge planning
Highlight and address findings of the National Inpatient Experience Survey specific to the hospital Design and implement an intervention for the discharge planning process at the hospital, with specific focus on understanding medication and treatment plans Disseminate and implement patient discharge panning booklets during the admission process Evaluate any implemented actions.

Funding for health literacy activities
Identify funding opportunities and coordinate applications for funding Raise awareness with management and Allied Health Care Professionals (HCP) for funding opportunities.
Form filling and hospital volunteer team Advocate for assistance for service users with form filling across the hospital Advocate to expand the volunteer role to build capacity for reducing Health Literacy demands on service users.
Physical environment improvements Advocate for and assist with prioritising physical environmental improvements within the hospital maintenance plan, e.g., navigation and way finding.
contribute to the development of an action plan at a local hospital. The work was guided by a member of the hospital's HLC. The outcomes of the engagement process have served a number of important purposes.
Firstly, the contribution of adults with literacy needs has provided a crucial element to the work of the hospital-based HLC. Health literacy responsiveness has been defined as 'the provision of services, programs and information in ways that promote equitable access and engagement, that meet the diverse HL needs and preferences of individuals, families and communities, and that support people to participate in decisions regarding their health and social wellbeing'. 36

| Limitations
Covid-19 public health restrictions meant that the number of potential contributors had to be quite small to accommodate the room size. Nevertheless, 6 PPI contributors is an appropriate number in PPI research. A review of PPI in health literacy interventions documented a range of 3 to over 100 PPI representatives. 30 Earlier plans to bring the PPI contributors and the HLC together to enhance engagement were not possible due to public health restrictions. PPI contributors favoured the idea of the 'Ask me 3' framework. The Ask Me 3 ® is a validated teaching tool created by HL experts to prompt patients and caregivers to ask specific questions regarding their treatment plan to enhance their understanding of their health conditions. 43 While this approach is popular in HL practice, it is important to acknowledge that the evidence supporting its effectiveness is limited. However, its use is linked to increasing staff awareness of the importance of clear communication. 44 Another study, linking the questions to videos, has also shown positive outcomes. 45

| Conclusion
In Ireland, the findings of the National Inpatient Experience Survey 46 can provide leverage to embed HL responsiveness in healthcare organisations For example, the survey has consistently identified difficulties and dissatisfaction with the discharge planning process for patients. Meaningful improvement in this area should involve PPI contributors with literacy, health and social care needs to co-produce the healthcare solution through involvement in aspects of research design. 30 In this pilot work, PPI contributors acted as advisors. Further work will focus on involvement in other stages of the research process including prioritising areas for further HL research. The outcomes of the current study provide a useful map of how to do this through the involvement of potential service users. In addition, the contribution of people experiencing literacy challenges to the design of an action plan to address HL is an important part of ensuring that such action plans are effective, feasible and sustainable. Meaningful engagement of service users, particularly those who may be marginalised, can also empower people to assert their rights regarding health care and the right to understand. This in turn can act as a lever to mobilise healthcare organisations to become more responsive to the health literacy needs of the populations served.