Involving patients and users in audit and research: benefits and pitfalls Sandra Mathers NHS Grampian, and The Health Services Research Group, The Robert Gordon University Aberdeen.

Why should we involve patients?

Political imperative –Govt: The New NHS: Modern and Dependable (1997) –National: Consumers in NHS (now INVOLVE) 1999 –Local: Organisations providing support e.g.folk.us Democratic right of citizens Positive outcome for both –participants –quality of research

Difficulties with terminology patientinvolvement userparticipation service userengagement consumerconsultation client Require a definition of user and involvement

Public involvement research is doing research with or by the public rather to, about or for. Involve, 2004

Audit Experience of patients after barium enema Convenience sample of 150 patients Questionnaire to be completed after leaving the department both open and closed questions Response rate 71% –27% said they had difficulties with journey after BE –50% still had abdominal discomfort 1 day after BE –25% had problems flushing the loo 2 days after BE Outcome: Provision of patient information leaflet After you barium test and redesign of barium suite including installation of shower and tea and coffee area.

Why involve patients? Able to offer different perspectives Help to ensure that the issues identified are important to them Ensure that money and resources are not wasted on research that has little or no relevance Ensure that research doesnt just measure outcomes that are identified and considered important by professionals Help to recruit their peers for research projects Help access other people who are marginalised e.g. minority ethic, disabilities Help to disseminate the results of research and work to ensure changes are implemented Involve 2004

Reasons given for not involving 1 or 2 people cannot be representative of all relevant groups Trained or professionalised patients cant reflect the views of typical patients People will not understand research Too many problems about confidentiality People who are emotionally involved cant be objective Too expensive and time consuming Unrealistic expectation of research and its implementation Involve 2004

When to involve?

At all stages... Identifying, and prioritising topics Commissioning Designing research Managing research Undertaking Analysing and interpreting Dissemination Evaluating

Levels of involvement Consultation –One off meeting to ask their views Collabaration –Ongoing partnership with members of public e.g. Steering groups Service user control –Locus of power shift from researchers to patients Involve 2004

Factors that hinder involvement Attitudes Knowledge Power Resources Values Small Voices Big Noises. 2001

Main recommendations Budget commitment from funding bodies and sponsors of research to ensure involvement research becomes a reality Emphasise the importance of shared values, mutual respect, and trust between partners in research. Flexible approach to research, including the use of innovative methods of research Small Voices Big Noises, 2001

Main recommendations Involvement at the earliest stages so both professionals and lay people feel ownership of project Meetings should be informal as possible to put people at ease Allocation of resources e.g. training, costs Small Voices Big Noises, 2001

Organisational barriers Lack of support and resources for both professionals and patients No culture of involving patients in research Paternalistic approach

Researchers need to develop new ways of working use of such an approach (participatory research) implies more than just a certain perspective or philosophy. Those who employ it must be prepared to operate in some non-traditional ways...and overall work in ways they may not have learned about in research class. Alvarez and Gutierrez, 2001

How do we engage children to cooperate during x-rays? Innovative ways to engage children in research –Video box –Graffiti wall –Use of cameras

Benefits of involving patients? Able to offer different perspectives Help to ensure that the issues identified are important to them Ensure that money and resources are not wasted on research that has little or no relevance Ensure that research doesnt just measure outcomes that are identified and considered important by professionals Help to recruit their peers for research projects Help access other people who are marginalised e.g. minority ethic, disabilities Help to disseminate the results of research and work to ensure changes are implemented Involve 2004

Pitfalls from involving patients Time consuming for both professionals and patients Lack of training and support for both professionals and patients Danger of professionals being accused of tokenism Patients may gain unreal expectation of outcomes Stressful for both professionals and patients

What evidence do we have that this involvement is taking place? Use involvement: a systematic review Article in English MEDLINE, ASSIA, CINAHL 15 papers found –Users seldom involved throughout process, usually beginning and end –Lack of body of knowledge regarding the effect of user involvement on quality of research Chesson and Mitchell, 2004

In conclusion Requires a paradigm shift in research Change in research cultures Frameworks need to be put in place to support staff and patients

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