Patient and public involvement (PPI) refers to research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them (1). The fundamental principle, which led to public involvement in research, is that people who are affected by the outcomes or process of research have the right to have a say in what, and how, research is undertaken (2). There is a growing emphasis on involving the public and patients across all stages of the research process. The benefits of PPI across health and social care research are being documented and recognised. Leading UK research funding bodies such as National Institute of Health and Care Research (NIHR) and UK Research and Innovation (UKRI), the body with oversight of a research budget of £8 billion, have indicated the importance and expectation of the active involvement of the public and patients in all stages of the research that they fund. Patient and public engagement is slightly different from PPI, with a focus on ensuring information and knowledge about research is disseminated to patients and the public through mechanisms such as events, exhibits and talks. It is designed to ensure that lived experience influences the design and delivery of research that is of benefit to people. Throughout this paper, we refer to our activity as PPIE to encompass patient and public involvement and engagement. Within the paper, other sources may use the term PPI or PPIE and so when referring to a specific aspect of our work, we will describe it in full as engagement or involvement.
Approaches to patient and public involvement include consultation, collaboration, co-production, and patient led/user-controlled research. These involve differing levels of commitment and responsibility. Consultation asks members of a group for their views and uses these to inform decision making. Examples of consultation include discussing research project ideas with patients and the public to find out how relevant they think the projects are, and asking patient and carers to read, and provide feedback on, documents in the research design pathway. Collaboration/co-production is an ongoing partnership between researchers and members of public, where decisions about the research are shared (1). It is a sharing of power between patients, the public, clinicians, researchers, service providers and policy makers. Examples include PPI members collaborating with researchers to develop a grant application or being involved with interviews with research participants for qualitative data collection. Patient-led research is research that is controlled, directed, and managed by service users and their service user organisations (1). Table 1 highlights the differences between involvement, engagement, and participation in research.
Table 1
Types of patient and public involvement and engagement and participation in research.
Involvement: |
Consultation | Asking members for their views and using these views to inform decision making. |
Collaboration/ co-production | Where decisions about the research are shared between researchers and members of the public. |
Patient-led | Where research is controlled, directed, and managed by service users and their service user organisations. |
Engagement | Where information and knowledge about research is provided and disseminated through a range of activities. |
Participation | Where members of the public take part in the research study. |
The benefits of incorporating PPIE in health research are many and can be valuable for members of the public, patients, researchers, community groups and clinicians (3, 4). There is recognition that involvement can improve the quality and relevance of research to patients and the public (2, 5). Ethical and democratic benefits include the right of the public to have a voice in how public money is being spent and what research the money is funding. When effective this results in greater transparency and accountability to funders and the public. Patient and public contribution to research proposal development and study design can increase the chance of funding due to the early input from contributors, increasing the clarity, credibility, and relevance of the study. An ethical argument in favour of PPI is that the individual has the right to be fully involved with any health care or research intervention being done ‘to’ them as a person (6).
Public involvement in health research in the UK needs to become more diverse and inclusive. For public involvement to be effective in improving research quality and relevance, and therefore improve health outcomes, the patient and public members/contributors must reflect the diversity of our communities. Recruitment of a diverse and inclusive group of people is a recognised challenge for PPI (7). Data from the NIHR public contributors’ feedback survey carried out between December 2018 and January 2019, highlighted that the NIHR public involvement community mainly consisted of older white people (8). Young people and minority ethnic communities were typically under-represented. Younger people made up only 2% (under 25) and 14% (age 26–49) of surveyed public contributors. Only 2% of surveyed public contributors came from Asian ethnic groups and only 3% represented black ethnic groups (8). The term ‘under-served communities’ refers to the people who the research community need to do more with to provide a better service for. Under-served communities often face barriers in accessing healthcare information and services, as well as accessing, and getting involved, in research. To involve people from a wide range of backgrounds including underserved communities, researchers must make a conscious effort to go out to people, in their own communities, to raise awareness of their research and to invite people to take part.
Setting out to work with people with hearing loss/ profound hearing loss adds challenges if meetings are to be inclusive. This very challenge to make them inclusive highlights the barriers that people with hearing loss are likely to encounter when their communication requirements are not considered. Meetings need to be designed to support participation through being accessible for all members, irrespective of their hearing status, to engage and contribute. There is diversity within deafness. The needs and communication methods vary between people who are deaf, Deaf, and hard of hearing. Several communication methods and tools are used by d/Deaf and hard of hearing people including lip-reading, British Sign Language (BSL), Sign Supported English and the use of assistive technologies such as hearing aids and cochlear implants. D/deafness can co-exist with other sensory disabilities, including poor or little sight. Adjustments need to support participation in meetings and other activities. Language service professionals including sign language interpreters, captioning/note takers and the use of deafblind manual can help bridge what is otherwise a communication gap.
Our goal is to create an active and enduring PPIE group, whereby a partnership is created between researchers and patients and people with hearing loss, parents, and carers which empowers the members of the group to contribute to, and influence, the research being carried out to benefit people with hearing loss and their families. We aspire to establish and sustain a group where there is mutual reward, respect, and benefit for all members of the group. The main drivers of this work are to increase public awareness of hearing loss and hearing healthcare; the use and value of assistive technologies such as cochlear implants; access to cochlear implants and to improve hearing outcomes for people with hearing loss and/or a cochlear implant.
We approached the NIHR Research Design Service in November 2021 to determine whether funding existed to establish a hearing loss PPIE group. This led to support from PPI officers within NIHR to enable us to start to develop our PPIE strategy. We recognised there was not generic funding available at that time, which highlighted the importance of including appropriately costed applications for research bids that would benefit from a well-developed hearing loss PPIE group. Funding at the early stages of PPIE is essential to facilitate the time commitment to develop and grow relationships, to manage the administration of a successful group and to reach out into the community. The notion of a group was first advertised to patients at the University of Southampton Auditory Implant Service (USAIS) in March 2022 through twitter, the USAIS website, and flyers in the clinic reception area. Our first meeting, with 8 group members, was held in May 2022. Between May and December several more meetings were held, with a steady increase in number of members in the group. By December 2022, it was clear that there was value to the group members and that we needed to expand and broaden the membership. We advertised through local support groups, social media and at local community groups in a small, funded community-engagement project. Meetings in January, May and July 2023 saw 12–14 members participating. By July, 10 of the group members were people who had joined after discovering the group through our community engagement and outreach activities.
As the group developed and evolved, we worked with members of the group to co-design and establish the elements of the group. These included the group name [ALL_EARS@UoS], the logo, ethos, aims and objectives all of which was written up and agreed in a terms of reference document. Our aims are to work with the group members to identify and prioritise the most relevant research and to involve members at all stages of the research process. To support this, we have held a training and information session about the complexities of the research process and highlighted all the points where members could get involved through this process. By taking the time to learn about our group member’s experiences we are starting to be able to identify the issues that are most important for people living with hearing loss. We want to turn these issues into research questions then turn these into research projects.
We aim to sustain the group by ensuring that researchers and health care professionals are aware of the group, and that they approach us early in their research planning. We have established a framework to describe how researchers can work with members of our group including how researchers can share ideas and receive feedback from members of the group about project ideas. We ask that researchers build appropriate levels of costings for PPI into research applications, consider giving some of their time to support PPI and to think about how they can support the group to be recognised more widely.
Aims
We aimed to evaluate the impact, effectiveness, and engagement of the PPIE group ALL_EARS@UoS using an anonymous questionnaire. The data was used to produce a PPIE action plan. Members of ALL_EARS were invited to be part of the evaluation steering group and be involved at all stages of the evaluative research process. The questionnaire was designed with the collaboration of the entire steering group using the NIHR National Standards for Patient and Public Involvement (PPI) as a framework.
Everyone who was a member of ALL_EARS at the time of the survey in May 2023 was invited to complete an online, anonymous questionnaire. Our objective was to gather data to report on the development, progression, and effectiveness of ALL_EARS PPIE group in peer reviewed and grey publications.