Transcript Jean Cooper Moran - (HCAI) Service Users Research Forum …

CCF PPI 2009
Active patient and public involvement
in research applications
National Institute for Health Research
Central Commissioning Facility
Jean Cooper Moran, Senior Manager
Patient and Public Involvement, NIHR CCF
NIHR Research Programmes: Translating
research evidence into NHS practice
Proof of concept
Basic Research
(Biomedical, population,
Social Science&
engineering & technology)
Efficacy
Experimental
Medicine
Effectiveness
and costeffectiveness
Knowledge
transfer for
NHS
Research Centres
Programme Grants
Healthcare Technology
Cooperatives
Health Technology Assessment
Service Delivery
and Organisation
Research for Patient Benefit
Research for Innovation,
Speculation and Creativity
Invention for Innovation (i4i)
NICE
Adoption
into the
service
Active patient and public involvement
in research applications
The Research for Patient Benefit Programme:
• Funding for the programme to £25 million per year
• Grants may be up to 36 months duration with a maximum
cost of £250k
Research for Patient Benefit (RfPB)
About the programme:
• Response-mode funding
• Supports high quality health services and public health
research relevant to the NHS
• Managed by the NIHR Central Commissioning Facility
• Ten Regional Funding Committees
RfPB Regional Funding Committees
Up to 20
committee
members
(includes two lay
members on
each committee)
x10 (one in each SHA area)
Aims of the RfPB programme
RfPB supports projects in health services and
public health research that could:
• Study the way that NHS services are provided and used
• Evaluate whether interventions are effective and provide
value for money
• Examine whether alternative means for providing
healthcare would be more effective in terms of cost and
effectiveness
• Formally assess innovations and developments in
healthcare
RfPB - A vision of research….
• Arising from daily practice in the NHS
• Developed between NHS and other partners
• Open as to topic and as to method
• Generating tangible benefits in health and healthcare
A responsive programme with a strategic scope
- regionally delivered and centrally led
Research for Patient Benefit Year One in numbers
Funding competitions held in year 1
Projects funded
Awarded
Up to £250,000 per award
Project duration
Peer reviews from the academic and practice communities
3
• 79
£14.5m
up to 3 years
over 1000
Committee members across 10 regions of England
200
Lay members of regional funding committees
20
Lay reviews of applications by individuals and groups
Committee meetings in 10 regions of England
Enquiries through the NIHR CCF website.
over 140
60
1,000
Source: Prioritising Patients: NIHR Research for Patient Benefit Programme – A review of the first three
funding competitions (November 2008)
RfPB Competition 1
Examples of funded projects:
• A critical analysis of the mental health needs of older prisoners
• Relative efficacy and cost-effectiveness of different treatment
approaches currently used in the management of epilepsy in people
with a learning disability
• The acceptability, feasibility and effectiveness of individual versus
parent enhanced cognitive behaviour therapy in young people with
obsessive compulsive disorder
• Early detection of psychosis via community and educational
organisations: a feasibility study
• The use of text messaging (SMS) to reduce repetition of self-harm:
an exploratory trial.
What do SURF and HCAI do?
We are looking for people from all walks of life to join
our groups and help:
• Decide how best to involve patients and public in future
research
• Identify the most important areas for research in these fields
• Become involved in developing, designing and conducting
new research
• Keep the general public informed by publicising research
findings.
What are our lay colleagues
looking for?
•To feel they can make a
contribution as a service
user
•To offer their own and
their family’s experience
• “I am an MS patient and have been for
a number of years. This activity (lay
review) gives me a chance to feel
useful again.”
•To make contacts for
others and to network
• “I resigned from my professional career
when I had a baby, and she is a deaf
child. I would really like to review in this
area – can you help me?”
•To make a focused
contribution in a target
disease area and assist
NHS research in that field.
• “ My husband died recently from
cancer and I felt helpless to do any
good until I joined my local LInkS group
and found out about research
programmes and lay review.”
PPI and research assessment
in the NIHR CCF programmes
PPI is managed as an integrated part of our
programme management:
- Through our review and assessment processes – this
means all members of each programme have experience
of PPI and how to apply it
- By helping the applicant teams include PPI in their
application to best effect
Key topics are - Where do I find lay volunteers?
What is appropriate PPI? and What is good practice for
composing the application’s lay summary?
Looking for good PPI practices
in the research applications (1)
What do we ask our reviewers to look for?
• The Plain English summary is a key ingredient
• Have the relevant ‘appropriate’ organisations or groups
of service users been involved in the planning?
• What activity took place to create an environment for
PPI before the application was written?
• Accurate completion of the PPI ‘grid’ – tell the truth
• Is there a co-applicant service user?
Looking for good PPI practices
in the research applications (2)
Does the planning:
• Make a discernible difference?
• Use the social model of disability approach?
• Involve patients in the early development of the
proposal?
• Have equal steering group representation for
professionals and lay people?
Source: Linda Laurie and Sue Hinder, lay committee members, at the RfPB 2009 Lay
Committee Members’ Workshop, NIHR CCF 30 April 2009
Looking for good PPI practices
in the research applications (3)
Does the planning:
• Involve service users in designing questionnaires and
topic guides, conducting interviews and focus groups,
reviewing transcripts and contributing to interpretation and
preparing patient information?
• Are there arrangements for participants to be informed of
research findings?
• Is there involvement of patient groups and charities in
disseminating the findings among patients and service
users? (RfPB Director’s Message No.4)
Source: Linda Laurie and Sue Hinder, lay committee members, at the RfPB 2009 Lay
Committee Members’ Workshop, NIHR CCF 30 April 2009
How do we manage lay colleague
involvement?
(1) Invitation to review from NIHR CCF. (2) What does a lay colleague
How is the contact made?
need from NIHR CCF to
accept the invitation?
•
•
•
NIHR CCF website
information and contact
by PPI manager
•Knowledge of the NIHR
programmes
Recommendation from
UKCRN/other source
•Clear and useful guidance
Direct contact with
service user
organisations
•Understanding of the task
•Sense that effort is
appreciated
•Feedback
Summary of the PPI aims of the NIHR
Central Commissioning Facility
Provide appropriate clear guidance when recruiting
PPI colleagues for review tasks
Provide appropriate, clear guidance on the review
form for reviewers’ use
Provide support for those members of the
public undertaking PPI activities
Track and develop best practices in all
these areas
Patient and Public Involvement team
at NIHR CCF
Thank you
Contacts
NIHR CCF, PO Box 407, Teddington, Middlesex, TW11 0XX
Email: [email protected] (PPI Manager)
Email: [email protected] (PPI Administrator)
Tel: 020 8943 7648 Fax: 020 8943 8972
Web: www.nihr-ccf.org.uk