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

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

patient involvement

user participation

service user engagement

consumer consultation

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

AuditExperience 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 doesn’t 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 implementedInvolve 2004

Reasons given for not involving

• 1 or 2 people cannot be representative of all relevant groups• ‘Trained’ or ‘professionalised’ patients can’t reflect the views of

‘typical’ patients• People will not understand research• Too many problems about confidentiality• People who are emotionally involved can’t 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 doesn’t 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 implementedInvolve 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 1966-2003 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

Useful sources

• www.modern.nhs.uk• www.show.scot.nhs.uk/involvingpeople• www.conres.co.uk• www.dipex.org