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Introduction

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Introduction

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  1. Development and evaluation of a collaborative model for Consumer Research Panels in Cancer Research NetworksTony StevensAlf OliverConsumer Liaison Lead ChairNational Cancer Research Network Humber and Yorkshire Coast Consumer Research Panel INVOLVE Conference,East Midlands Conference Centre, 11 November 2004

  2. Introduction • Involvement of consumers in research important priority • Increasing consumer involvement in the national cancer research organisations: National Cancer Research Institute (NCRI): Clinical Studies Groups National Translational Cancer Research Network (NTRAC): Patients and Carers Programme • BUT within Cancer Research Networks, consumer involvement in research initiatives are variable and unco-ordinated

  3. Some of the potential benefits of involving consumers in research… • Involvement can help identify and prioritise issues important to consumers • Can help to ensure that only research relevant to the NHS is funded • Consumers can access marginalised and excluded members of communities and assist with recruitment • Ensures that the research examines and measures things that are important to consumers • May aid dissemination and implementation of results • Education on both sides

  4. Background to the project Joint project funded by Macmillan Cancer Relief and the National Cancer Research Network to assess whether the establishment of Consumer Research Panels will have any influence on the ways that consumers are involved in cancer research and if this has any effect on the research that is conducted.

  5. What we want to do… • To collaborate with three Cancer Networks to establish Consumer Research Panels (CRPs). • To develop a package of initiatives to foster consumer involvement in research that can be adapted and replicated in other Networks. • To develop and deliver programmes of ongoing recruitment, training, support and ways of working that are effective in each Cancer Network. • To evaluate the influence of each Consumer Research Panel.

  6. What we want to achieve… To provide a Panel of trained consumers that the research community within the local Cancer Research Networks can collaborate with at all stages of the research process – from setting priorities to helping design and manage studies.

  7. How were the three Networks selected? • levels of existing consumer activity • experience of the Macmillan Partnership Facilitator • maturity of the Research Network • representation from each of the three Macmillan Regions • existing links with local clinical and academic researchers. Central South Coast Humber and Yorkshire Coast Surrey, West Sussex and Hampshire

  8. How will it work? • Local CRPs would link with the Service Network via the Partnerships Project. • CRP membership include members of the Partnership Groups plus other interested consumers. • Recruitment to the CRPs based on a broad approach designed to maximise representativeness and inclusion. • Target of 20 consumers in each CRP. • Strategy to engage research community. • Development of induction, training and mentoring programmes.

  9. Timescales • This initiative began in June 2004 and will end in May 2006. • The first Consumer Research Panel was established in August 2004, the second in October 2004 and the third in December 2004. • Each Panel evaluated at baseline, and then six and twelve months later.

  10. Evaluation This initiative will be independently evaluated. The evaluation will be conducted by: John Sitzia Patient and Public Involvement Research Unit R &D Dept Worthing & Southlands Hospitals NHS Trust

  11. What will the evaluation team look at? • Benefits/challenges of integration with service development initiatives • Relationships between consumers and research community • Effect on patterns of research activity • Scope and remit of research activity • Impact and effectiveness of increased involvement • Overview of consumer involvement in all Cancer Research Networks

  12. Can consumers in other Networks benefit from this initiative? There will be ongoing feedback to the other 31 Networks, who will be encouraged to develop their own Consumer Research Panels. Any resources that are developed will be placed on the web for other Networks to access. These resources will include: • Planning and administrative guidance • Training and induction materials • Lessons from the evaluation • Examples of good practice

  13. Humber & Yorkshire Coast Cancer Network Consumer Research Panel Alf Oliver Patient Representative

  14. Humber & Yorkshire Coast Cancer Network Aims and objectives • To promote consumer involvement in all stages of the research and development process in order to improve the quality of research • To assess if establishing a Consumer Research Panel influences the involvement of consumers in cancer research • To see whether this affects the local and national portfolio

  15. Humber & Yorkshire Coast Cancer Network The dream! • Identify and prioritise all issues of importance to consumers • Ensure knowledge of research is relevant to the NHS • Access marginalised and excluded members of the community

  16. Humber & Yorkshire Coast Cancer Network What is happening now? • Publicity completed • Expressions of interest are being received • A meeting will be held on 1 December 2004 to introduce the concept to interested parties • 1 to 1 interviews • Finalising membership of the Consumer Research Panel

  17. Humber & Yorkshire Coast Cancer Network What happens next? • Active recruitment Consumer Research Panel membership across the community • The Consumer Research Panel will link with the existing Patient Involvement Groups in the Cancer Network • A strategy will be produced to engage research from the local community • A programme of training and mentorship • Evaluation Challenges and benefits

  18. Further information Contacts: The Project: - Tony Stevens Consumer Liaison Lead, National Cancer Research Network, Arthington House, Cookridge Hospital, Leeds LS16 6QB Tel: 0113 392 7570 t.stevens@ncrn.org.uk The Evaluation - Vivienne Brown Research Programmes Manager, Patient and Public Involvement Research Unit, Worthing & Southlands Hospitals NHS Trust, Worthing BN11 2DH Tel: 01903 285076 vivienne,brown@wash.nhs.uk

  19. Involving people with dementia and their carers in research Lynne Corner and John Bond Centre for Health Services Research & Institute for Ageing and Health University of Newcastle upon Tyne

  20. Overview • User panel • Evaluation of user panel • Factors contributing to success • Issues in user involvement

  21. Purpose of user involvement • To ensure focus remained on the priorities of older people with dementia and their carers • To advise on practical aspects of the research process

  22. Membership and features of the panel • 3 people with dementia • 2 carers of people with dementia • (2 married couples) • Met as individuals or dyads • 3 monthly review of membership

  23. Contacts with one couple over a 12-week period Activity Number of contacts Social contact 3 Arranging or confirming visit 6 Reviewing consent 2 Discussion of topic guide 6 Information on project progress 3 Posting or delivering documents 3 Discussing communication techniques 2

  24. Level of involvement • Consultation - users asked about their views and this information contributes to decision-making • Collaboration – ongoing partnership where users guide the project throughout • User control – users design, undertake and disseminate the results or commission research into a particular topic

  25. Involvement in different stages of research Prioritising research areas  Planning research Managing research Designing research instruments  Undertaking research Analysing research  Writing publications Disseminating research  Implementing action

  26. Degree of influence • Individual or group meetings • Able to cancel and reschedule meetings • Able to decline to contribute to tasks • Consent renegotiated regularly

  27. Outcomes for panel members and the researcher • Researcher • Kept in touch with realities of living with dementia • Enjoyable • Resource intensive • Panel members • Anxiety at outset • Opportunity to make a contribution • Enjoyable

  28. Outcomes for research • Helped researcher to find meaningful and appropriate ways to ask questions • Ensured focus on relevant topics • Process enabled panel members to develop expertise to review QoL measures

  29. Factors contributing to success • Seen as legitimate activity by funding body • Boundaries to involvement made explicit from the outset • Flexibility over process • Building rapport and confidence • Involvement of married couples • Personality of researcher

  30. Issues in involving people with dementia • Payment for involvement • Involving users in short projects • Managing anxiety at the outset • Enabling participants to contribute • Challenging our own assumptions about: • the areas in which involvement is appropriate • who is able to be involved

  31. Contact details Dr Lynne Corner & Professor John BondCentre for Health Services ResearchUniversity of Newcastle21 Claremont PlaceNewcastle upon TyneNE2 4AAUKE-mail: l.s.corner@ncl.ac.uk Telephone: +44 (0) 191 222 7968

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