Rosemary Chesson, Louise Mitchell, Catherine Westwood Folk.us Revealed Conference March 2005 The untold story Folk.us Evaluation Carers Research Partnership
Mar 28, 2015
Rosemary Chesson, Louise Mitchell, Catherine Westwood
Folk.us Revealed Conference March 2005
The untold story
Folk.us Evaluation
Carers Research
Partnership
Carers Research
Partnership
Carers Research
Partnership
Aims of evaluation
1. To provide information about the activities of Folk.us (and their outcomes) so as to inform decisions about Folk.us direction in the future.
2. To inform policy, practice and other initiatives in this field.
Carers Research
Partnership
“Tupela Meri”
Carers Research
Partnership
Evaluation design
Two complementary studies:
(1) activity study (quantitative)
(2) outcomes study (qualitative)
Included e-panel (service users and carers)
Carers Research
Partnership
Main activities
Management of network
Training/events
Research/projects
Publications
Carers Research
Partnership
Documents accessed
Managementnetwork
Training/event
Research/projects
Publications
n = 120
Carers Research
Partnership
Who was involved in activities?
• Key role of Management Steering Group
• Professionals and users
• NHS rather than social care (1° rather than 2°care)
• Statutory sector rather than voluntary sector
• Service users rather than carers
Carers Research
Partnership
Folk.us: members of the network
0
10
20
30
40
50
60
70
June 01-02 June 03-04
usersuser repsprofsnot known
%
n =148 n = 229
Carers Research
Partnership
Activities: meeting Folk.us objectives
• review strategic aims of Folk.us
• develop work of Folk.us
• support development of collaborative research with users
• form links with national & regional organisations
• promote mutual learning between services
• disseminate the outputs of Folk.us
All objectives met
Carers Research
Partnership
Outcomes study
Measuring Impact
• time span: 5 yrs – long enough?• size of resource • on individuals/cultures?• locally/nationally?• how to detect?• change attributable to external environment?• positive or negative impact?• where they have had an impact?
Carers Research
Partnership
Carers Research
Partnership
Measuring impact cont...
Outcome study (interviews) revealed
- different perceptions of Folk.us (what it is)
- different expectations (includ. of achievement)
- differences both within and between ‘groups’
View expressed: the process and not the outcomes is important.
Carers Research
Partnership
Main achievements
Folk.us main achievements:
- ‘being there at the start’
- surviving: ‘kept going with a positive attitude’
- doing all it has with a limited number of personnel
- legitimising the idea of user involvement in research
- bringing user involvement into the public domain
Cont..
Carers Research
Partnership
Main achievements cont..
- successful conferences
- own research esp. Small Voices, Big Noises
- its publications (Research Governance leaflet)
- funding small user-initiated projects
- providing useful training sessions
Carers Research
Partnership
Views on impact
‘bringing .... two worlds (medical and social care research) together harmoniously.’
‘..... It can speak to user organisations in a way which most university departments can’t do.’
‘Goodness! Funding, actually! For us it has to be that was the biggest personal impact.’
Carers Research
Partnership
Views on impact cont....
‘They have started the process of change in the medical people down here ...’
‘.... So I think not one thing but chipping away at various fronts’.
Carers Research
Partnership
Views on impact: summary
• professionals rather than service users were more likely to query impact
• people from secondary rather than primary care more likely to doubt they had had impact
• some respondents believed currently Folk.us had less impact locally than in the past
Carers Research
Partnership
Impact academic researchers
Conflict highlighted between user involvement in research and university and NHS research conditions and requirements regarding
- funding streams (predetermined priorities)- difficulties in obtaining funding- research governance (liability)- ethical approval- ‘doctor-led’ NHS research culture/research paradigm- the Research Assessment Exercise- research training provided by universities
Carers Research
Partnership
Service users’ views of impact
Service users emphasised:
• the impact that involvement with Folk.us had had on them personally
‘It has made me feel a really valued person again!’
• the linkages with services and impact of research on services
‘you are still an active community member ... I find it very rewarding .... It is a two way partnership. You have got to put in, in order to get back.’
Carers Research
Partnership
Future directions for Folk.us- focusing on local needs
- obtaining long term funding/reducing reliance on statutory funding
- working with user-orientated organisations
- helping to change the culture of clinicians
- reach out more to grass roots service users
Carers Research
Partnership
Conclusions
Evaluation revealed
- complexity of achieving user involvement in research
- complexity in evaluating impact
- scope and scale of achieving user involvement (Folk.us main focus on NHS)
- resources needed for the task
Carers Research
Partnership
Concluding remarks
‘There are people that come to the lectures and meetings and there are people that come and are influenced by the people at the
meetings – who are probably the main instigators of any change in the health service.’
Carers Research
Partnership
Concluding remarks
‘I suppose my hope is that they are encouraged to continue on in that vein because its a slow burn thing. Really one day it might ignite, but you probably have to fan the embers for quite a while actually. It would be a shame to pull the plug on something that is probably getting more widely known and perhaps producing some useful results.’
I
Carers Research
Partnership
Thank youto all participants
to INVOLVE for funding