Service-user led research Flashcards
When did the emptying of the English psychiatric hospitals start?
In the late 1960s
What was the state of psychiatric patients of English hospitals in 1980s?
By 1984, many patients had been rehoused in the community
What happened with the Camden Mental Health Consortium?
> Massive policy change
> Peer-interviews gave patients the chance to speak
- for psychiatry is was pointless since people with psychosis often have incoherent speech
What were the findings of the Camden Mental Health Consortium?
- Some aspects of the old asylum system were missed
- Parts of the new provision were disliked
What did the Department of Health (UK) do in 1996 regarding service users?
Consumers in NHS Research
- first time in the world where service users were involved in research process
What were the aims of consumers in NHS research (1996)?
- Involve in the research process people who use the health service across all specialities
- Make research more relevant
- if you involve users, you will discover what really matters - Lead to greater patient benefit
How did patient-generated patient-reported outcome measures (PROM) emerge?
How to make a difference to research and practice?
- mainstream methods are constraining
- > Change methods + Develop new methods = PROMs
- PROMs were limited -> patient-generated PROMs
What do patient-reported outcome measures (PROMs) consist of?
> Patients complete the measures themselves
-> not a clinician-judged outcome measure
What were the limits of the patient-reported outcome measures (PROMs)?
Questionnaires devised purely by clinicians and conventional researchers
- > Patients get no say in what they’re asked
- > What patients think is invisible
What do patient-generated PROMs consist of?
Those doing the research are also service users
-> participatory research
What is the patient-generated PROM model based on?
Participatory research
-> researchers have the same or similar experience as the participants
What is the aim of the patient-generated PROM model?
Reduce the power relations between research and participants
- which influences the results
What is new in participatory research?
Participatory research projects aim to shape the research by the community
BUT the researcher is external to the community (only one identity)
What is the VOICE research (2009) and did it find?
Views On In-Patient CarE: user-led research
- main outcome measure in an RCT of psychological interventions in in-patient treatment
What were the findings of VOICE (2009)?
The grey literature and lots of anecdotal evidence show that people aren’t happy with in-patient care
What was the inclusion criteria in VOICE (2009)?
- People who had been in-patients in the local provider trust in last 2 years
= recent in-patient experience - One group of only involuntary patients (who had been detained)
- All groups had some participants who had been detained
What are the steps to develop a user-generated outcome measure?
- Focus groups
- each of 6-8 people (VOICE had 4 groups)
- each group has a facilitator - Provisional measure (questionnaire)
- derived from existing questionnaires
- quantitative and qualitative questions - Feasibility study
- refine the measure - Psychometrics and statistical treatment
- data driven through statistical programme
- > rigorous research
What is the nature of the process to develop a user-generated outcome measure?
It is a bottom-up process
- rather than top-down (conventional way to make questionnaire)
What is the iterative process of a feasibility study in the development of user-generated outcome measure?
> Pilot questionnaire given to 10 people
- see what problems come up
> Make necessary changes and give the new version to another 10 people
- see what problems come up
> Again, make necessary changes and give to another 10 people…
- until the last 10 people don’t have problems with the questionnaire
What are the two opposing reactions to user-generated research instruments?
- I forgot you’re not a psychiatrist
- We’ve told you our experience. Now tell us about yours
- > reciprocity
What is the problem in user-generated research when the researcher shares his/her experience with the participants?
If researcher and participants, both service users, share their experiences, it might shape the discussions
-> contaminating the research
What is the problem of gatekeepers in research lead in low-resource settings?
Often, communities in low-resource settings are hierarchical
- the first point of contact is the elders, usually men, who decide who the researcher talks to
- > issues about gender, sexuality, class or caste
- > defeats the purpose of community shaping the research
Who were the gatekeepers in VOICE (2009)?
Community mental health professionals
Who are the people / service users who might be excluded by gatekeepers in research?
- Those who lack capacity
- Too unwell
- Chaotic
- Ambivalent residence status
-> people who have different experiences and are more powerless than service users recruited
