Including people who live and work in care homes in research studies, and sharing findings with them, is an essential part of care home research. Involving them in the shaping stage of research moves the idea of involvement to a different level: one of partnership. Patient and Public Involvement and Engagement (PPIE) activities are now expected as a core part of health and care research practice. For example, National Institute for Health Research (NIHR) application forms ask researchers how they intend to involve the public throughout a study, and how much budget will be allocated for those activities. The Enabling Research in Care Homes (ENRICH) Toolkit supports this goal, drawing on lessons learned by people who have been involved in care home research.

PPIE plans prompt researchers to think about how they will work with members of the public, once studies are up and running. Involvement usually takes place through formal activities like advisory group meetings and discussions with panels of PPIE representatives. More informal processes for involving Experts by Experience, particularly in the very early stages of developing research, are less well established. These activities need to take place before a grant has been awarded. The pathway to include people very early on can seem obscure, both to researchers and the people who might like to contribute to very early shaping of research plans, with people who live in care homes being particularly invisible in such early involvement.

Involving the public in this way means researchers need to recognise the limits of their knowledge and points of view. Members of the public can then be appreciated as producers of knowledge, rather than just passive participants. Interactions can take on a more organic form, evolving and adjusting over time, compared with the formal specifications for PPIE activities designed to satisfy
funding award committees. Authenticity is central to these relationships, requiring time and commitment to avoid the risk of tokenism.

First steps

A key stumbling block for researchers’ very early involvement with members of the public, before a grant has been awarded, is access to funding so that people can be reimbursed for their time, expertise and expenses. We applied for a public involvement fund through the NIHR Research Design Service London, before developing our proposal. The fund enabled us to involve and reimburse people living in care homes and family members, in the early development and planning stages.

Involving people living in a care home

We met with three people living in a care home in an online video call, with support from the care home’s Volunteer Coordinator. The three advisors shared their views on aspects of care home life that they thought were important in relation to the research topic, and talked about how they thought their experiences of healthcare might be improved. They also introduced broader insights, which they felt would be important to keep in mind when planning the study.

Involving family members of people living in care homes

We also organised a series of video and telephone call discussions with two caregivers who were family members of people living in care homes, over three months. Initially we worked with one caregiver, who felt it would be useful to collaborate with someone else, to compare and contrast experiences. Through contacts from the first caregiver’s network, we invited a second collaborator.  The caregivers noted the value of having someone to provide mutual support and share ideas with, over a period of time.

These discussions highlighted key points, which shaped our understandings of the research and may have been overlooked otherwise. The Experts by Experience emphasised the importance of their trust in care home staff as intermediaries when raising health concerns. They described healthcare processes in the care home that seemed to go on ‘behind the scenes’ and feelings of not always being included in arrangements made on their behalf. They shared the additional consideration that people who live in a care home may not express their wish to become more involved, because of not wanting to seem ‘unreasonable’ in their expectations.

Reflecting on our experiences of involving Experts by Experience at a pre-grant phase, we have identified several learning points:

Practical points for early involvement

•  Making contacts, and developing relationships and trust, takes time and flexibility.
•  Online communication can help to reach people who may not otherwise become involved, and care home staff who are willing to  facilitate these connections can be crucial.
• Discussion with pairs or small groups allows for sharing of ideas, but may not suit everyone.
• Tailoring of approaches is needed, to take account of individual preferences and comfort levels.
• It is important to build in time to reflect on and integrate new learning and perspectives.
• Being open with people that a particular project may not proceed if a grant is not awarded but
  that the discussions are valued beyond this, in shaping ways of thinking about the research
  topic.

We encourage researchers to take steps to involve people living in care homes, family members and other caregivers, and to share experiences of the varied ways in which this has been achieved ‘before the grant’, to help demystify early involvement.