Rosemary Chesson, Louise Mitchell, Catherine Westwood

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Folk.us Evaluation

• Rosemary Chesson, Louise Mitchell, Catherine
  Westwood
• Folk.us Revealed Conference March 2005
• The untold story

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Aims of evaluation

• 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.

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Tupela Meri
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Evaluation design

• Two complementary studies
• (1) activity study (quantitative)
• (2) outcomes study (qualitative)
• Included e-panel (service users and carers)

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Main activities
Management of network Training/events Research/pr
ojects Publications
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Documents accessed
n 120
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Who was involved in activities?

• Key role of Management Steering Group
• Professionals and users
• NHS rather than social care (1 rather
• than 2care)
• Statutory sector rather than voluntary sector
• Service users rather than carers

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Folk.us members of the network

n 148
n 229
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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

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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?

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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.

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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..

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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

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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 cant
do. Goodness! Funding, actually! For us
it has to be that was the biggest personal
impact.
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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.
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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

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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

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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.

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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

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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

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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.

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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

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• Thank you
• to all participants
• to INVOLVE for funding

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