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Rachel NickeasService User and Evaluator

Jane StewartResearch Fellow/

Lead for Consumer Involvement in Research

Nottingham Primary Care Research Partnership hosted by

NHS Nottinghamshire County

How an evaluation helped us to develop consumer involvement, find out what does

and doesn’t work and how involving consumers impacted on research

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We will be talking about … Consumer involvement in primary care

research How we:

Developed it

Evaluated it

And the difference it made to research

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We will highlight…

The things that impact on developing consumer involvementTraining

The importance of the group

Support

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Challenges at the beginning…

Consumer involvement new to project lead

Varied research programmes Developing the group

Wanted to be collaborative

Small amount of time and money

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Judge the value of what we were doing

Add to the evidence base

Developmental evaluation

Immediate practical focus

Independent evaluator

Trent Research and Development Support Unit ‘Research Capacity Building’ Award

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Collecting and analysing the information

Observation: Meetings, training sessions

Semi structured interviews: At 3 time points

Phone and face to face

Written feedback: Consumers - training sessions Consumers and Researchers meetings

Thematic analysis Importance of an early finding

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Results What have consumers been doing?

Participants perceptions of consumer involvement

What difference does consumer involvement make?

Challenges

The way forward

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What have consumers been doing?

Steering group membersMulti-centre randomised

controlled trialMedicines management

programme

Integral part of study teamQualitative Community Matron Study

Co-applicants for ethicsWriting interview guide

Data AnalysisCo-authors of paper

Publication next month

Worked on a number of clinical genetics in primary care studies

in a more ad hoc wayContributed to bid development for

Research programme grant

Presentations and workshops about consumer

involvement to UniversityColleagues and

Primary Care Research Networks

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Members of consumer involvement steering group,

Primary Care Trust Research and Development Strategy group

Primary Care Research Network strategy group

Member of an ethics committee

Writing patient letters of invitation,

study information leafletsfor several studies

Contributed to bid for £2million 5 year research

Programme and nowSteering group member

Recruiting more consumers to advise on study

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Ageing and Rehab research

Clinical Genetics in Primary Care research

Medicines Managementresearch Injury Prevention research

CORE GROUPCONSUMER RESEARCH

ADVISORY GROUP

Consumer involvement Steering group

Ethics committee

Various strategy groups

Delivering training workshops

Rapid response bid development

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Participants perceptions Researchers

Initial thoughts

Final views

Consumers

Initial thoughts

Final views

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How does it make a difference?

Patient information

Wider views

Team work

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Challenges

Time and Support

Finances

Roles

Personal stories

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The way forward

Management – a coordinator

Pool of advisors

Finances

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Training

Identifying what is needed

Working out the best way of doing training What When Who

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Importance of the GROUP Purpose of the group

Group development

Forming

Storming

Norming

Performing

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Support needed For consumers

Within the group Working in different research studies

For researchers Working in different ways

For Project lead Evaluation feedback an important element

As we change our remit and expand..

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Thank you for listening

Any questions?

Contact details jane.stewart@nottspct.nhs.uk