DACHA study Patient and Public Involvement

What is the DACHA study?

The DACHA study is a four-year project led by Professor Claire Goodman at the University of Hertfordshire. It is funded by the UK government through the National Institute of Health Research (NIHR).   The study is about care homes and the information (data) collected about the people who live in them.  The aim is to explore and enhance how data about resident quality of life and care are shared between health and social care organisations working with care homes, and with family members, in a way that benefits all. There are five, linked streams of work called work packages.

What is Patient and Public Involvement (PPI)?

Patient and Public involvement in research is a term used by NIHR.  It refers to an active partnership between members of the public and researchers. This means that members of the public work alongside the research team and are actively involved in contributing to the research process, for example as advisers and possibly as co-researchers.  The term ‘public’ is taken to mean potential patients, carers, family members and people who use health and social care services as well as people from organisations that represent people who use services.

In relation to the DACHA study about care homes, the word ‘patient’ is not the best word to describe people who live in care homes.  This project aims to develop a prototype Minimum Data Set (MDS) to be adopted and used by care homes.   The ultimate aim is that this should benefit the health and well-being of people living in care homes.  This outcome is of huge importance to the families of people living in care homes.  Many people living in care homes are affected by dementia.  Many are affected by long term physical conditions.  The development of a usable MDS needs to take account of the day to day practices and experiences of staff in both direct care roles and care home management roles as they and their activities are likely to be an important source of data for a MDS.   We think that the particular groups among the public and care homes whose voices are important to keeping the study relevant are:

• People living in care homes (residents) (including people living with dementia)
• Families of people living in care homes (relatives)
• Staff – in direct care roles
• Staff – in management roles in care homes

We are involving people from these groups actively to influence the study.

What are the aims of PPI in DACHA?

The aims of PPI in DACHA are:

• To keep the aspirations and concerns of residents and relatives about data recording and information sharing at the centre of the DACHA study.
• To ensure that the DACHA study is well-informed about the day to day realities of care home work and systems, so that study findings are relevant, practical and useful.
• To achieve co-design in each work package and through the research, dissemination and implementation.
• To help publicise the DACHA study so that the findings from the study can be put into practice.
• To provide a good example of the involvement of care home residents, their relatives and staff in research projects, and to learn more about supporting effective involvement.

How will we organise PPI in DACHA?

Residents, relatives and staff are all individuals with individual experiences.  Some may not feel confident in talking about research, and more specifically, about data use in care homes.  To help people to be confident in sharing their thoughts and views relevant to the DACHA study we aim to work with people in groups.  We will arrange two types of group that will meet regularly:

• PPI Panel

Made up of two or three representatives from each of the following groups:  family carers, family carers of people living with dementia, family carers of people living with long term conditions, staff in direct care roles and staff in care home management roles.

• Care home based resident PPI groups

Two groups of 4-6 care home residents, who meet regularly in their own care home.

These groups will be facilitated by members of the DACHA PPI team.  Members of the groups will be supported for their involvement by the DACHA PPI team.  They will also be offered financial recognition for their time.

Below you can view the introduction videos for care home based resident PPI groups:

Support offered to PPI Panel members

• Members are offered the opportunity to submit contributions to the agenda before each meeting;
• Papers are circulated in advance, to provide sufficient time for a response;
• Minutes are circulated, shortly after any meeting;
• The DACHA PPIE team, led by Dr Anne Killett at the University of East Anglia, are there to support members and address any questions or concerns.

Payment of PPI Panel members

• Members will be paid by the University of Hertfordshire, where the DACHA Study Lead (Professor Claire Goodman) is based.

• Members can elect to be a volunteer or join the University of Hertfordshire as an Expert by Experience, or an employer can receive payment as a registered supplier for services.

• Payments are made in accordance with the School of Health & Social Work’s agreed pay schedule at the University of Hertfordshire.

• Members will be paid for each two-hour meeting, plus an additional two hours for work in between, paid at £20 per hour. Travel expenses will be reimbursed.
• There are three choices offered for reimbursing the PPIE panel members:

1. Volunteers can receive a voucher for a High Street outlet
2. Experts by Experience will receive direct payment, for which the individual would need to register with the University of Hertfordshire (need to send passport recorded delivery, and be identified in person or virtually)
3. For care home staff, the employer could be registered as a supplier to the University of Hertfordshire and a direct payment made to them.

The DACHA PPI team will meet with researchers leading and running the 5 work packages to support researchers to prepare material for discussion with the PPI panel and resident PPI groups.  The DACHA PPI team will also provide feedback to researchers from the PPI Panel and resident PPI groups.

The table underneath gives a summary of the PPI relationship with each of the 5 DACHA work packages.

Who are the DACHA PPI team?

Framework for involvement

The framework for involvement in the project will be to have core, dedicated, researchers supporting PPI representatives, and then support to Work Package Leads for tailored involvement in each work package.  Anne Killett will coordinate the PPI involvement across the project, with advice from Susan Fortescue and working closely with Julienne Meyer who will lead consultation with national care home networks, and Liz Jones as consultant and representative for care homes and the National Care Forum.   This core team will work with My Home Life (which has given leadership support to, and has good links with the following care home groups: Joseph Rowntree Housing Trust, Avante Care, Friends of the Elderly, HCOne and Brendoncare) in order to set up 2 care-home based residents’ PPI groups to act as consultants to the project.  Previous research and experience of the team (Backhouse et al 2016) shows that some care home residents are interested and able to contribute as PPI to research, but many welcome the support and lower burden of the research involvement activities being brought to them.  The project lasts for 4 years and will aim to sustain 2 care home based resident PPI groups at any point in the project.  The core PPI team will be guided by the level of interest and any changing needs in the care home groups as to the actual length of time for involvement of any one group.

Involvement from staff in direct care roles and management roles, family carers and representatives of people living with dementia will be achieved by setting up a PPI panel that meets regularly throughout the life of the research project.

Practical approach to achieve PPI

In order to contribute PPI members need information, preparation and ongoing support.  Our approach to involve people includes a combination of setting up and supporting groups of people and taking the research to them, and also working with established advocacy groups.

References

Backhouse, T. Kenkmann, A. Lane, K. Poland, F. and Killett, A. (2016) Older care-home residents as collaborators or advisors in research: a systematic review Age and Ageing 45: 337-345, doi: 10.1093/ageing/afv201