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Identifying and prioritising behavioural targets for research in diabetes – Consensus from people with
diabetes and health professionals
Population Health and Health Services Research Alliance Seminar
28th April 2015
Jenny Mc Sharry & Molly ByrneHealth Behaviour Change Research Group, NUI Galway
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Systematic reviews Qualitative research
Theory building
Research prioritisation
process Consulting with key stakeholders
Randomised controlled trials
Overall Aim:To promote the routine application of Health Psychology to the
development and evaluation of behavioural interventions in population health and health services research
Diabetes Aim:To develop and evaluate two behaviour change interventions in diabetes:
One relevant to people with diabetesOne relevant to healthcare professionals
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PPI – what is it?
• Patient & Public Involvement - describes an active partnership between lay representatives and researchers.
• i.e. Research carried out in collaboration with or by PPI representatives rather than to, about or for them
(INVOLVE, part of UK NIHR, www.invo.org.uk)
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PPI can address ‘translation gaps’
• Sir David Cooksey 2006 Review of UK health research funding. UK Treasury– It has been stated that the biggest challenge today is
not the production of more research studies but the implementation of the findings of those already carried out
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‘We need to recognise that patients have the experience and skills that complement the researchers. They know what it feels like to suffer a particular disease and to undergo the treatments with their various side effects. They will have a good idea of which research questions are worth asking, and when a question should be framed differently’
Sir Iain Chalmers
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Brett et al., 2014 Health Expectations
• Systematic review of PPI impact on 66 health and social care research studies
• Enhanced quality and appropriateness of research
• Impacts for all stages of research:User-focused research objectives and research questionsUser-friendly info, questionnaires and interview guidesMore appropriate recruitment strategiesUser-focused data interpretation, implementation and
dissemination of study results
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Ennis et al., 2013 Br Jr Psychiatry
• 374 studies, Mental Health Research Network (England)
• Studies which included collaboration with service users in designing or running the trial were 1.63 times more likely to recruit to target than studies which only consulted service users.
• Studies which involved more partnerships — a higher level of patient and public involvement (PPI) — were 4.12 times more likely to recruit to target.
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School Institute Name to go here
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International panel review of HRB strategy 2010-2014
• ‘The panel felt that the goals of both Applied Biomedical Research and Clinical Research and Population and Health Services Research would benefit from consideration of integrated knowledge translation (iKT) approaches and programmes designed to accelerate translation of evidence into new products and services and to support and improve new innovations in service delivery.’
• ‘There is a clear deficit in Implementation Science in the Irish Research System.’
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Funders are responding...
HRB ICE Award Application 2015
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• UK Medical Research Council (MRC) Complex Interventions Guidance urges more emphasis on addressing feasibility and acceptability for patients and the public
www.mrc.ac.uk/complexinterventionsguidance• PPI recommended in report on the health research landscape
in Ireland commissioned by the Medical Research Charities Group (2014)– The Irish Health Research Forum, first meeting 2014– 2nd meeting May 12th – on research prioritisation
Funders are responding...
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School Institute Name to go here
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School Institute Name to go here
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Key PPI organisations
• US - PCORI (www.pcori.org) – Patient-Centered Outcomes Research Institute
• UK - INVOLVE (http://www.invo.org.uk/) – funded by the National Institute for Health
Research (NIHR) to support public involvement in NHS, public health and social care research
• Ireland – IPPOSI (http://www.ipposi.ie/) – Putting Patients in Policy and Medicines Development
School Institute Name to go here
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School Institute Name to go here
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School Institute Name to go here
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School Institute Name to go here
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Systematic reviews Qualitative research
Theory building
Research prioritisation
process Consulting with key stakeholders
Randomised controlled trials
Overall Aim:To promote the routine application of Health Psychology to the
development and evaluation of behavioural interventions in population health and health services research
Diabetes Aim:To develop and evaluate two behaviour change interventions in diabetes:
One relevant to people with diabetesOne relevant to healthcare professionals
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Photo by R/DV/RS - Creative Commons Attribution License https://www.flickr.com/photos/8265353@N05 Created with Haiku Deck
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Diabetes Research Prioritisation-Why?
To allow the HBCRG research agenda to be informed by key stakeholders
- People with Diabetes- Healthcare Providers- Policy Makers
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Photo by Sam Ilić - Creative Commons Attribution-NonCommercial License https://www.flickr.com/photos/40195741@N00 Created with Haiku Deck
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Diabetes Research Prioritisation: Objective
To identify, and agree on, a prioritised list of the most important provider and service user behaviours for research
3 key diabetes areas:
Managing Type 1 DM
Managing Type 2 DM
Preventing Type 2 DM
2 groups:
Patients
Healthcare Professionals
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Diabetes Research Prioritisation: Methods
Participant Profile Number of Participants
Hospital Based Practitioner 7Primary Care Practitioner 3Public Health Practitioner 3
Researcher in Diabetes 2Policy Leader 1Patient Organisation Representative
1
Psychologist 1Patient with Type 1 DM 3Patient With Type 2 DM 3
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Diabetes Research Prioritisation: Methods
Nominal Group Technique (Jones et al., 1995)• “Expert panel” consensus method
– Identify participant views on a topic– Group together similar suggestions– Discuss as a group– Private ranking of items– Rankings calculated, presented and discussed– Private re-ranking
Identify and agree on a prioritised list of
behaviours for:
3 key diabetes areas:
Managing Type 1 DM
Managing Type 2 DM
Preventing Type 2 DM
2 groups:
People with diabetes
HCPs working in diabetes area
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Diabetes Research Prioritisation: MethodsPre Meeting Task-Identify Behaviours
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Diabetes Research Prioritisation: MethodsPre Meeting Task-Identify Behaviours
List behaviours which you think need to be changed, and are important targets for research, to improve outcomes for people with diabetes.
3 topic areas:Managing Type 1 DMManaging Type 2 DMPreventing Type 2 DM
2 groups:People with diabetesPeople providing health services to people with diabetes
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Identify and agree on a prioritised list of
behaviours for:
Diabetes Research Prioritisation: Methods
Nominal Group Technique (Jones et al., 1995)• “Expert panel” consensus method
– Identify participant views on a topic– Group together similar suggestions– Discuss as a group– Private ranking of items– Rankings calculated, presented and discussed– Private re-ranking
3 key diabetes areas:
Managing Type 1 DM
Managing Type 2 DM
Preventing Type 2 DM
2 groups:
People with diabetes
HCPs working in diabetes area
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14:00-14:05
Welcome and Introductions
14:05-14:15 Research prioritisation overviewMeeting plan
14:15-15:35 Stage 1: Prioritisation of behaviours1
[20 mins per topic]
14:15-14:35 Managing Type 1 DM
14:35-14:55 Managing Type 2 DM
14:55-15:15 Diabetes in Pregnancy
15:15-15:35
Preventing Type2 DM
15:35-15:50Break/ Collation of Results
15:50-16:50 Stage 2:Results presented and discussed
Stage 3:Prioritisation of behaviours 2 [15 mins per topic]
15:50-16:05 Managing Type 1 DM
16:05-16:20 Managing Type 2 DM
16:20-16:35 Diabetes in Pregnancy
16:35-16:50 Preventing Type2 DM
16:50-17:00 Next StepsMeeting Close
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• Presentation of identified behaviours
• Rank top 6 behaviours you think are the most important targets for research
Diabetes Research Prioritisation: MethodsResearch Prioritisation Meeting
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School Institute Name to go here
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School Institute Name to go here
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• Presentation of identified behaviours
• Rank top 6 behaviours you think are the most important targets for research
• Results calculated and summarised• Results fed back to group and discussed
• Re-rank top 6 behaviours you think are the most important targets for research
Diabetes Research Prioritisation: MethodsResearch Prioritisation Meeting
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Diabetes Research Prioritisation: Results
Key diabetes area Total number of behaviours generated at pre-meeting survey
(n = 16)
Number of behaviours remaining following
collation
Additional behaviours generated during
meeting(n = 23)
Final number of behaviours for
ranking
Managing Type 1 DM – Patients
37 17 5 22
Managing Type 1 DM – Healthcare Professionals
42 25 7 32
Managing Type 2 DM – Patients
52 26 6 32
Managing Type 2 DM – Healthcare Professionals
47 26 5 31
Preventing Type 2 DM – General Population
46 30 8 38
Preventing Type 2 DM – Healthcare Profs/Health Services
48 52 3 55
Total number of behaviours 272 176 34 210
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Ranking scores of patient behaviours within the area of managing Type 1 diabetesRanking 1 (N = 22) Ranking 2 (N = 22)
Rank
Behaviours
Total score
No. of top 6 rankings
% of participantswith item in top 3
Rank
Behaviours
Total score
No. of top 6 rankings
% of participantswith item in top 3
1
Take insulin as required
60
12
40.9
1
Take insulin as required
75
14
59.1
2 Test/ monitor blood glucose as often as recommended
41 10 31.8 2 Take medication as prescribed
39 9 31.8
3 Match carbohydrates to insulin daily
37 9 31.8 3 Match carbohydrates to insulin daily+Discussing having diabetes with others
35 35
8 8
27.3 27.3
4 Attend scheduled appointments and contacts in specialist clinic
34 9 22.7 4 Quit smoking 28
10
13.6
5 Discuss having diabetes with others
30 9 22.7 5 Attend and engage with structured education
28 9 13.6
6 Eat healthily 29 8
22.7 6 Test/ monitor blood glucose as often as recommended
27 8 13.6
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Ranking scores of patient behaviours within the area of managing Type 1 diabetesRanking 1 (N = 22) Ranking 2 (N = 22)
Rank
Behaviours
Total score
No. of top 6 rankings
% of participantswith item in top 3
Rank
Behaviours
Total score
No. of top 6 rankings
% of participantswith item in top 3
1
Take insulin as required
60
12
40.9
1
Take insulin as required
75
14
59.1
2 Test/ monitor blood glucose as often as recommended
41 10 31.8 2 Take medication as prescribed
39 9 31.8
3 Match carbohydrates to insulin daily
37 9 31.8 3 Match carbohydrates to insulin daily+Discussing having diabetes with others
35 35
8 8
27.3 27.3
4 Attend scheduled appointments and contacts in specialist clinic
34 9 22.7 4 Quit smoking 28
10
13.6
5 Discuss having diabetes with others
30 9 22.7 5 Attend and engage with structured education
28 9 13.6
6 Eat healthily 29 8
22.7 6 Test/ monitor blood glucose as often as recommended
27 8 13.6
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Ranking scores of patient behaviours within the area of managing Type 1 diabetesRanking 1 (N = 22) Ranking 2 (N = 22)
Rank
Behaviours
Total score
No. of top 6 rankings
% of participantswith item in top 3
Rank
Behaviours
Total score
No. of top 6 rankings
% of participantswith item in top 3
1
Take insulin as required
60
12
40.9
1
Take insulin as required
75
14
59.1
2 Test/ monitor blood glucose as often as recommended
41 10 31.8 2 Take medication as prescribed
39 9 31.8
3 Match carbohydrates to insulin daily
37 9 31.8 3 Match carbohydrates to insulin daily+Discussing having diabetes with others
35 35
8 8
27.3 27.3
4 Attend scheduled appointments and contacts in specialist clinic
34 9 22.7 4 Quit smoking 28
10
13.6
5 Discuss having diabetes with others
30 9 22.7 5 Attend and engage with structured education
28 9 13.6
6 Eat healthily 29 8
22.7 6 Test/ monitor blood glucose as often as recommended
27 8 13.6
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Diabetes Research Prioritisation: Results
Key diabetes area
Highest ranked behaviour in Ranking 2
Managing Type 1 DM – Patients
Take insulin as required
Managing Type 1 DM – Healthcare Professionals
Engage in collaborative treatment goal setting with patients
Managing Type 2 DM – Patients
Attend and engage with structured education
Managing Type 2 DM – Healthcare Professionals
Engage in collaborative treatment goal setting with patients
Preventing Type 2 DM – General Population
Engage in healthy behaviours as a family
Preventing Type 2 DM – Healthcare Professionals/Health Services
Attend and engage with behaviour change training
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Diabetes Research Prioritisation: Results
Key diabetes area
Highest ranked behaviour in Ranking 2
Managing Type 1 DM – Patients
Take insulin as required
Managing Type 1 DM – Healthcare Professionals
Engage in collaborative treatment goal setting with patients
Managing Type 2 DM – Patients
Attend and engage with structured education
Managing Type 2 DM – Healthcare Professionals
Engage in collaborative treatment goal setting with patients
Preventing Type 2 DM – General Population
Engage in healthy behaviours as a family
Preventing Type 2 DM – Healthcare Professionals/Health Services
Attend and engage with behaviour change training
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School Institute Name to go here
Diabetes Research Prioritisation: HCP Behaviour
Potential target behaviours relevant to healthcare professional behaviour change in diabetes
Impact of behaviour change
Likelihood of changing behaviour
Spillover Score Measurement Score
Managing Type 1 DMEngage in collaborative treatment goal setting with patients
Promising Promising Promising Promising
Managing Type 2 DMEngage in collaborative treatment goal setting with patients
Promising Promising Promising Promising
Preventing Type 2 DMAttend and engage with behaviour change training
Promising Unpromising Promising Promising
Target Behaviour Chosen
Engage in collaborative treatment goal setting with patients
Michie, S., Atkins, L., & West, R. (2014). The behaviour change wheel: A guide to designing interventions London: Silverback Publishing.
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Milou FredrixPhD student
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School Institute Name to go here
Potential target behaviours relevant to patient behaviour change in diabetes
Impact of behaviour change
Likelihood of changing behaviour
Spillover Score Measurement Score
Managing Type 1 DMTake insulin as required/Match carbohydrates to insulin daily
Promising Unpromising Unpromising Promising
Managing Type 2 DMAttend and engage with structured education
Promising Promising Promising Promising
Preventing Type 2 DMEngage in healthy behaviours as a family
Promising Unpromising Promising Unpromising
Target Behaviour Chosen
Diabetes Research Prioritisation: Patient Behaviour
Michie, S., Atkins, L., & West, R. (2014). The behaviour change wheel: A guide to designing interventions London: Silverback Publishing.
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Diabetes Research Prioritisation-Positives
It is possible to engage key stakeholders in a consensus process to guide behavioural research within diabetes
- People with Diabetes- Healthcare Providers- Policy Makers
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Implementation Science
Behavioural Science
Public and Patient
Involvement
Diabetes Research Prioritisation-Positives
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Photo by Sam Ilić - Creative Commons Attribution-NonCommercial License https://www.flickr.com/photos/40195741@N00 Created with Haiku Deck
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Diabetes Research Prioritisation-Negatives
Patient experience
Time limitations
Level of specificity
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Diabetes Research Prioritisation-Negatives
“Rubik's cube of trying to understand and bring together multiple stakeholder views”
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Diabetes Research Prioritisation-Negatives
How to meaningfully link and engage with PPI advisors throughout research
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Diabetes Research Prioritisation-Negatives
Publication and dissemination Generalizability and
representativeness
More focused on diabetes than implementation
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PPI – what is it?
• Patient & Public Involvement - describes an active partnership between lay representatives and researchers.
• i.e. Research carried out in collaboration with or by PPI representatives rather than to, about or for them
(INVOLVE, part of UK NIHR, www.invo.org.uk)
When does PPI become research?
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Brett et al., 2014 Health Expectations
• Systematic review of PPI impact across 66 health and social care research studies
• ChallengesOn-going incorporation of user views into research agendaTokenistic attitude towards PPIRecruiting a diverse range of usersResearch findings being disseminated before publicationTime and cost
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PPI – Best Practice
• PPI embedded from the grant planning stage
• Specific plan of who will be involved and how they be supported
• Researchers trained on how to support PPI
• PPI advisors involved in dissemination
• Reimbursement of PPI advisors’ time
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Developing an Intervention to Improve Outcomes for YA with T1D in Ireland
Young Adult Panel Formation
PPI – Best Practice
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Photo by NASA Goddard Photo and Video - Creative Commons Attribution License https://www.flickr.com/photos/24662369@N07 Created with Haiku Deck
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• NIHR Research Design Service (RDS) PPI Bursary
• Up to £350 available for early PPI in developing proposals.• Supports applications for health research to national peer reviewed
funding streams (eg. NIHR. MRC etc)• Only prospective use considered, not for existing funded studies
PPI in Ireland: Requirements vs Support
HRB ICE Award Application 2015
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Identifying and prioritising behavioural targets for research in diabetes – Consensus from people with
diabetes and health professionals
Population Health and Health Services Research Alliance Seminar
28th April 2015
Jenny Mc Sharry & Molly ByrneHealth Behaviour Change Research Group, NUI Galway
@jenmcsharry