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
What is the purpose of consulting the community for user-generated research instruments?
To have a representative pool of participants (demographics reflecting the catchment area)
- you go in the community to see what people outside the research context think of the measures
When and how were topic-specific networks abolished?
2014: National Institute for Health Research
- made research organisation regional
- mental health networks disappeared
- any study must show it has service-user and carer participation
What are the challenges of the patient-researcher double identity?
> Most projects in KCL were collaborative, headed by psychiatry and psychology professors
> The idea you can be both a patient and a researcher is hard for some people
-> Whose and what knowledge counts?
What is the problem of gold standards in the hierarchy of evidence regarding patients?
- Gold standards (e.g. RCTs) are meant to be neutral, eliminating bias
- However, outcome measures are devised by clinicians
- > nay not be relevant to patients
Where does user-generated research appear in the hierarchy of evidence?
> Patients have an expertise as service users
- report experience of distress
- report experience of what psychiatry has to offer
- > different knowledge perspective
> YET, expert opinion is the weakest form of evidence
- experts are psychiatrists and committees (the same that make DSM)
- AND qualitative research is entirely absent
Where do bias and neutrality stand in service user-led research?
> Bias is a frequent charge
- accusations are implicit, occasionally explicit
- “biased, anecdotal, over-involved”
> Service users make no pretence of neutrality
- their standpoint is epistemological and political
What happened with the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2008?
- Endorsed by over 150 countries
- Gives equal protection to those with psychosocial disabilities for the first time!
(even Human Rights Act exempts some people with mental illness)
The is the article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) (2008)?
Equal recognition before the law
- “persons with disability enjoy legal capacity on an equal basis with others in all aspects of life”
What is the recent impact of the UN Convention on the Rights of Persons with Disabilities (CRPD)?
It recently shaped user and advocacy movements in the Global South
What could explain why the ‘Pan-African Network of Users and Survivors of Psychiatry’ change its name to ‘Pan-African Network of People with Psychosocial Disabilities’?
- Adopting the terminology of the Convention for the Rights of Persons with Disabilities (UN)
- “Users and survivors of psychiatry” are not appropriate in African cultures
- For some people in the network: “There we don’t have much psychiatry and we don’t want any more”
What is the position of WHO on user movements in countries?
- User groups are convened to help official services
- User groups are exclusively associated with mental health service providers
What is the problem of the work WHO on promoting user movements in countries?
- WHO only asks about groups associated with clinically-focused providers
- However, user groups can be about sports, peer-support, can be artistic
What are the benefits of peer-support?
- Experiences are shared
- Injustices can be aired
- Collective solutions can be found
What is the issue with the professionalisation of peer support in the West?
Many services have peer workers who are in difficult positions
What are the Special Rapporteurs at the UN?
- One responsible for health
- The other responsible for disability
What does the Special Rapporteur Dainius Pūras promotes about the right to health in global mental health in his 2017 report?
The focus on the brain, neurochemistry, stress, psychopharmacology
- is only one aspect of global mental health
- > it can be thought differently
“psychosocial distress would always be part of the human experience [with] growing emergencies, inequalities and discrimination”
“Mental health policies and services are in crisis of power imbalances”, “not chemical imbalances”
“urgent need for a shift in approach”
- “prioritize policy innovation” at “population level, targeting social determinants”
- “abandon the predominant medical model”
