The practicalities of PPI How do we go about it? The practicalities of PPI

When should we involve?

Who should we involve? Depends on the stage of the research cycle Depends on the research design Depends on the topic Depends on practical constraints – e.g. time Depends on the agreed role

Which level of involvement is best? Consultation? Collaboration? Co-production? User led?

Consultation Asking people for their views One off meetings - patient panel When you consult people who use services about research, you ask them for their views and use these views to inform your decision-making. For example, you might hold one-off meetings with people who use services to ask them for their views on a research proposal.  You will not necessarily adopt those people's views, but you may be influenced by them.

As members of a steering committee for a research project Collaboration Involves an active, on-going partnership with members of the public in the research process. As members of a steering committee for a research project Collaborating with members of the public to design, undertake and/or disseminate the results of a research project. Collaboration involves active, on-going partnership with members of the public in the R&D process. For example, people who use services might take part in a steering committee for a research project, or collaborate with researchers to design, undertake and/or disseminate the results of a research project.

Co-production Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge INVOLVE 2018 https://www.invo.org.uk/posttypepublication/guidance-on-co-producing-a- research-project/

User control Where the initiative and subsequent decision making is with service users It does not mean that service users undertake every stage of the research, or that 'professional' researchers are necessarily excluded from the process altogether.  User-controlled research might be broadly interpreted as research where the focus of power, initiative and subsequent decision making is with service users rather than with the professional researchers.  It does not mean that service users undertake every stage of the research, or that 'professional' researchers are necessarily excluded from the process altogether. They may be involved in collecting data, analysis and report writing.

Depends on the study: A study on identifying a gene for a rare inherited disease Mostly conducted in the lab by scientists Study being run in a high tech, well- resourced research centre A study exploring older people’s views on access to hearing screening Mostly conducted in clinics and the home through interviews and a survey Study being run from a cash starved community clinic

Small group work Read the case studies Which members of the public would be useful to involve and at what stage? How would you identify these people and approach them? What might their role be? What resources would be needed to support PPI in this project? Are there any special considerations?

PPI: Good practice Start early Who are you looking for? Give consideration to the aims of the project, the tasks to be addressed and whether people are able to fulfil them Be clear about reasons for involving people and what their role is (a ‘menu of opportunities’), what are you expecting them to do? – role description / person spec / terms of reference Check that whole team, including members of the public, are clear about reasons for and the role of involvement Identify potential barriers that need to be overcome Allow time for mutual understanding Offer appropriate training and ongoing support

Good practice (2) A minimum of two people who use services should be invited on any group/panel/project Keeping people in touch & fully informed about the project Making sure people have a real chance to contribute Nurture and ethos of partnership: mutual respect, and mutual clarity about what the involvement is for Expectations are often the biggest problem but by making these explicit, different perspectives can be constructive Avoid jargon

Good practice (3) Payment and expenses Reimbursement of expenses – not out of pocket Payment for time, skills and expertise It is good practice for members of the public who are actively involved in health and social care research to be paid for their time, skills and expertise Acknowledgement and other forms of reward

Showing you’ve taken ppi seriously in the application Describe who has been involved at each stage Describe what PPI has contributed to the proposal Describe how the proposal has benefited from the contribution Describe how involvement will continue throughout the project and the on-going contribution you expect it to make Include (adequate) costs of PPI in your application