Evaluating service user involvement

Question 1

What is the current broad shift of political spectrum regarding user involvement?

Answer 1

> Rose et al. (2014): “more corporate and professional mode” of confrontation and campaigning
- pragmatism and consumerism against stigma as impetus (momentum) and framework for user involvement

Question 2

What were the identified problems in the evaluation of studies adopted by the Mental Health Research Network (Katrina Stanley, 2010), which showed that although service users included 40% of randomly selected projects, there was a great variation in their input and overall impact?

Answer 2

> Lack of time and resources

> Absence of shared, practical definition of service user involvement

Question 3

Regarding the perceived barriers of user involvement, what were the findings of Trivedi and Wyke’s analysis (2002) on the process of user involvement?

Answer 3

1. The involvement of the user researcher changed the focus of the study in its design and content;
2. The user involvement process increased the amount of time taken to carry out and write up the project, as well as incurring financial costs for user consultation payments and dissemination (spreading of information)

Question 4

What did the results of Ennis and Wykes’ analysis (2002) of the Mental Health Research Network (MHRN) portfolio database suggest, in the identification of associations between study characteristics, funding bodies and recruitment success?

Answer 4

1. Patient involvement increased over time, although still limited in some areas of research;
2. Some funders, especially the National Institute for Healthcare Research, had more associated patient involvement than others
3. Studies with higher patient involvement were more likely to have achieved recruitment targets (i.e. reaching at least 90% of the target)

Question 5

What are the benefits of user involvement in research, as suggested in Ennis and Wykes’ analysis (2002) of the Mental Health Research Network (MHRN) portfolio database?

Answer 5

> Democracy and empowerment of service users
Identification and prioritisation of relevant research topics
Eliciting richer data because participants are more ready to share personal and perhaps stigmatising information
Service user involvement required and recommended by increasing number of funders
Generation of representative and robust findings
Evidence that user involvement increases the likelihood of a study’s success

Question 6

What does the INVOLVE (NIHR) Continuum model consist of?

Answer 6

Three levels of involvement:
(1) Consultation (research initiated) -> (2) Collaboration (jointly initiated) -> (3) User-control (user-initiated -> less common)

Question 7

What has the creation of free online training resources for service users who want to do their own research or learn more about the research process contributed to?
What does it show?

Answer 7

Reducing knowledge and power gap between researchers and participants.
=> new technologies and collectives are promoting developments in the field of user research

Question 8

What does the Service User Researcher Enterprise (USER) model consist of?
What is its current status?

Answer 8

> Project-specific consultative basis
-> expectations and objectives are agreed beforehand

> It is uncommon; more research occurs outside mainstream academia

Question 9

What is INVOLVE?

Why was it created for?

Answer 9

> A national advisory group supporting public involvement in:

• NHS
• Public Health
• Social care research

> 30 members including

• health and social care service users and practitioners
• people from voluntary organisations
• carers
• managers and researchers

> Created in 1996 to promote public involvement in NHS, Public health and Social care research

Question 10

Who requires details of involvement activity since 2005?

What are the critics that emanated from this?

Answer 10

Since 2005, details of involvement activity are required by:

• funding bodies
• NHS ethics committees

> Critics:

• involvement activities and service user knowledge are another data source to inform and support a more traditional research design, rather than a way of enhancing democracy and empowerment
• this requirement represents for some people a move away from the more ideological basis of service user involvement

Question 11

What is the current concern regarding inclusivity?

Answer 11

Amidst the growing pressure of service user involvement in research, the names and views of certain populations are liable to be overlooked or neglected

> Beresford (2013):

• “some groups, particularly from minorities often experience generally inferior access to and support from services. The same groups are likely to have inferior opportunities to get involved in schemes to strengthen their voice”
• > “likely to be to exacerbate and perpetuate inequalities face by some of the most disadvantaged groups in our society

=> lack of support and voice = Disadvantage

Question 12

What are Peter Beresford’s (2013) recommendations for challenging the imbalance in inclusivity?

Answer 12

1. Ongoing review and evaluation
   - of organisational policies, processes, procedures, practices
   - > who is being included and excluded
2. Organisational commitment
   - and training in equality of opportunities
3. Specific strategies
   - for involving excluded groups and imaginative ways of working together
4. Clarity on the issue of representation
   - who is speaking for whom
   - important when engaging with minority groups within minority groups (e.g. people of ethnic minorities with experience of mental distress)
5. Evaluation of participation
   - to assess how inclusive and diverse it is