Patient & public involvement in applied health research

Sabi Redwood

PCCS / Collaborations in Leadership in Applied Health Research and Care

What is PPI?Ways in which patients can draw on their experience and members of the public can apply their priorities to research, and the evaluation, development and organisation of health and social services

–Patients/ service users as individuals

–Community organisations and carers on behalf of others

–Members of communities, localities and the general public

(Tritter 2009)

PPI as a mechanism for

• dialogue between different stakeholders in order to the co-produce knowledge and services

• accountability to ensure local service meet the needs of local communities and patients/ service users

• for driving change in the culture of health and social care services and redefining the relationship between communities and the state

PPI in the research process

Identifying and prioritising

Design

Development of the grant application

Undertaking and managing the research

Analysing and interpreting the data

Dissemination of research findings

Implementation

Evaluation

Identifying and prioritising

• Through local user groups and organisations to help inform research priorities

• Consultation about research topics and priorities, important to them as service users

• Collaboration with researchers to identify topics for research

• User generated/ led topics for research

Design

• Clarify the research question and affirm its importance/ relevance

• Ensure the methods selected are appropriate for patients

• Assist in creating a recruitment strategy

• Review and comment on proposed data collection methods

Development of the grant application

• Who/ why and how?

• Help to ensure that the research proposed and chosen methods are acceptable/ ethical

• Define outcome measures

• Advise on the appropriateness of the lay summary

• Raise awareness about costs of involvement, expenses and prompt researchers to cost for involvement

• Be named as co-applicants

Undertaking and managing the research

• Part of steering group to manage / monitor the research

• Assist in writing the patient information and consent forms

• Produce research updates that are patient/ lay friendly

• Can assist in conducting interviews and surveys

Analysing and interpreting the data

• More appropriate for user led approaches especially in relation to seldom heard groups (for example sex workers)

• Assist the research team in developing themes from data

• Consultation to verify research team’s interpretation of data

Dissemination of research findings

• Advise on different avenues for disseminating results

• Jointly present the findings with researchers

• Write information for local patient / groups hospitals etc

• Assist in getting results / findings published on charities / voluntary organisations websites

• Help distribute results within their information networks

• Produce summaries of findings

Implementation

• Increase the likelihood that results of research are implemented, by adding validity to the findings

• Develop patient information for new services / interventions within hospitals, GPs surgeries etc

Evaluation

• Continued involvement with the study to maintain focus and address issues as they arise

• Collaborate with researchers to evaluate the research process

Personal observations

• Political not just technical or procedural issue

• Requires supportive infrastructures

• No persuasive evidence that it leads to ‘better’ research, but maybe benefits are not measurable

• Benefits to individual PPI partners not enough

• Importance of the move from individual story to collective voice

Support for researchers

• Research Design Service

• INVOLVE publicly funded national advisory group, which promotes and supports greater public involvement in health research

• Development of local infrastructures – work in progress