Quality Research in Dementia

1
Service user care giver involvement in research

• Practical involvement best practice models.
• Ian Thomas Alzheimers Society

2
The why?

• Involvement of service users and carers essential
  for building in reality checks.
• Keeps research relevant to needs of those for
  whom research will ultimately be beneficial.
• Links the academic/scientific to the everyday.
• So has to be best practice, common sense
  academically sound.

3
Principles of involvement (1)

• Be clear about the purpose of using carers and
  users identify the benefits recognise the
  boundaries of involvement.
• Agree how involvement will happen involvement
  in planning assessment
• Be clear about the way involvement will occur
  service users carers understand the reasons for
  the types of activities they are involved in
  make sure the task is in proportion to ability.
• Exchange feedback about the outcome of the
  involvement explain how involvement has
  influenced the project.

4
Principles of involvement (2)
5. Try to recognise barriers to involvement
e.g. attitudes physical procedures and
practices. 6. Value the contribution, expertise
and time of users carers payments, expenses
etc. 7. Learn from working with users carers
set up audit monitoring systems report back as
to how contribution was used. 8. Ethical
involvement is important ethical scrutiny
should be at the forefront.
5
User/carer example

• Quality Research in Dementia (QRD Network)
  Alzheimers Society

6
Quality Research in Dementia

• Network of 150 people with personal experience of
  dementia
• Covers England, Wales and Northern Ireland
• Volunteers

7
Delivering

• High quality research
• Public involvement
• A partnership between people with dementia, their
  carers and the researchers

8
The consumer perspective

• Consumers have a strong interest in research
  related to their personal experience
• Consumers can and want to play an active role
• Consumer involvement provides a stronger voice in
  campaigning and lobbying (HTA, MRC, The Big
  Lottery Fund)

9
Why the Alzheimers Society funds research?

• To overcome dementia
• To prevent dementia in the majority of people in
  the future
• To be able to treat and provide the best possible
  care for those that will be suffering from
  dementia in the near or longer term

10
Why the Alzheimers Society funds research?

• Dementia research is not given high enough
  priority by other funders
• To have influence on the type of research that is
  done
• To help build a medical community that is aware
  of research and open to new findings
• To help build a research community interested in
  research that will benefit patients in the
  shorter or longer term

11
Consumer involvement
Strategy Setting
Call for proposals
Implementation
Consumer training and support
Grant Application Review
Dissemination
Grant Panels
Project Management
12
Grant mechanisms

• GRANT TYPES
• Project grants
• Research fellowships
• Dissemination grants
• Innovation grants
• Cochrane systematic reviews

• THEMES
• Research into all types of dementia
• Cause
• Cure
• Care

13
Selection process
14
(No Transcript)
15
(No Transcript)
16
Examples of QRD comments
17
(No Transcript)
18
NeuroDemCymru

• User carer participation programme (UCP)

19
Aims of NeuroDemCymru

• A health and social care infrastructure which
  supports clinical research and removes barriers
  to its conduct.
• Research and development will be more closely
  influenced by the issues and concerns facing
  service users, care-givers, practitioners and
  service managers, commissioners and planners.
  Stakeholders will have a closer involvement with
  the planning and conduct of research.
• The results of research will have a greater
  influence on service provision, with more
  consistent implementation of evidence-based
  practice, and further development of
  translational research.

20
User and Carer Participation (UCP) -
Practicalities

• Plan and implement the UCP programme so that
  service users and care-givers in all parts of
  Wales are fully integrated into NEURODEM Cymru
  initiatives
• Work closely with a range of voluntary sector
  partners within broad neurological remit.
• Work closely with the Clinical Research
  Collaboration Cymru Involving People (Cynnwys
  Pobl) Infrastructure Support group.

21
Moving forward

• UCP project board established
• Access from NeuroDemCymru to users and carers
  established.
• Quarterly reporting mechanisms on progress.
• Cymdeithas Alzheimers as host