Older People in research: a case study from the London Primary Care Studies Programme Vari Drennan & Sybil Myerson For the Identifying Unmet Needs in Older People Research Team. Royal Free and UCL Medical School Mary Hinkley, UCL © UCL

Overview of Our Presentation We will describe The research project The older peoples contribution The benefits and challenges identified through internal and evaluation processes Describe how our learning has been used in other projects Invite dialogue and comment on other experiences of involving consumers in research

Our Study : Identifying unmet need in older people in primary care Research aim : to develop and validate a tool for primary health care professionals to identify unidentified health needs of older people Rationale : Evidence of health problems that can be ameliorated that are not being identified in primary care National Service Framework for Older people recommends assessment for unmet needs at each consultation

Our Study : Identifying unmet need in older people in primary care 11 London primary care programme studies Equip Evaluation of User involvement by peninsula University

The research management team 3 GPs (2 academics) 2 older people 1 qualitative researcher /user link 1 quantitative researcher 1 academic primary care nurse 1 consultant psychiatrist OP 1 project officer Administrator Mary Hinkley, UCL © UCL

The older person in the development of the research proposal –Commentary and review by Help the Aged –Identifying sources of potential “user” representatives –Costing realistic “user” involvement in the research team Mary Hinkley, UCL © UCL

The study Two phases 1.Development of the tool through establishing the topics considered most important by older people and primary care professionals analysis of previous primary care studies a postal questionnaire to 1000 older people in 4 GP practices focus groups of users (4) and professionals (4) consensus conference older people and professionals 2.Piloting and then testing the tool (S.P.I.C.E.)

User views into the design Postal questionnaire to 1,000 people Focus groups with older people Results debated at a Consensus conference

S.P.I.C.E S for senses P for physical mobility I for incontinence C for cognition E for emotion Currently analysing the data on the testing of the use of the heuristic in everyday primary care consultations with older people Mary Hinkley, UCL © UCL

The Range of Involvement Interview panel members for the project officer Developing and piloting postal questionnaire Commentators on analysis Recruiting and co-facilitators of user focus groups Observers and commentators at and after consensus conference Presentations at professional conferences Comment on draft articles

The things the team got (mostly) right ! Including “users” as part of the team –Able to criticise the professionals –Able to contribute to most items –Managed to keep interested and involved Real re-imbursement for their time Support from an academic link Support from EQUIP to all the projects in 11 the London Primary Care Studies

Evaluation of user involvement Equip Interviews 3 times Peninsula University evaluation of all 11 projects Mary Hinkley, UCL © UCL

Change of opinion Talked and resolved problems Frustrations Journey of discovery Want to see action Internal evaluation

Benefits Gained user perceptions early on in all processes Wider knowledge and experience brought in Improved recruitment into pilots Improved recruitment into focus groups Aided the running of user focus groups Aided analysis and interpretation of data

Challenges Communication processes e.g not on Professional language, jargon, behaviour Assumptions of professionals about knowledge base Time commitment Financial issues in re-imbursement

Involving service users brings challenges but also “real world” benefits to the research process. Thank you Your views, experiences and comments ?