identifying and prioritising behavioural targets for research in diabetes consensus from people...

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

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

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)

http://www.invo.org.uk/

http://www.healthtalk.org/peoples-experiences/medical-research/patient-and-public-involvement-research/topics

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

‘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

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

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.

School Institute Name to go here

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.’

Funders are responding...

HRB ICE Award Application 2015

• 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...

http://www.mrc.ac.uk/complexinterventionsguidance

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


http://www.pcori.org/




http://www.ipposi.ie/

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

Photo by R/DV/RS - Creative Commons Attribution License https://www.flickr.com/photos/8265353@N05 Created with Haiku Deck

Diabetes Research Prioritisation-Why?

To allow the HBCRG research agenda to be informed by key stakeholders

- People with Diabetes- Healthcare Providers- Policy Makers

Photo by Sam Ilić - Creative Commons Attribution-NonCommercial License https://www.flickr.com/photos/40195741@N00 Created with Haiku Deck

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

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


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:


Managing Type 1 DM

Managing Type 2 DM


2 groups:

People with diabetes

HCPs working in diabetes area

Diabetes Research Prioritisation: MethodsPre Meeting Task-Identify Behaviours

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

Identify and agree on a prioritised list of

behaviours for:


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


Managing Type 1 DM

Managing Type 2 DM


2 groups:

People with diabetes

HCPs working in diabetes area

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


14:55-15:15 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]



16:20-16:35 Diabetes in Pregnancy

16:35-16:50 Preventing Type2 DM

16:50-17:00 Next StepsMeeting Close

• Presentation of identified behaviours

• Rank top 6 behaviours you think are the most important targets for research

Diabetes Research Prioritisation: MethodsResearch Prioritisation Meeting

• 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

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


52 26 6 32


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

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


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

Diabetes Research Prioritisation: Results

Key diabetes area

Highest ranked behaviour in Ranking 2




Engage in collaborative treatment goal setting with patients


Attend and engage with structured education



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


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


Preventing Type 2 DMAttend and engage with behaviour change training

Promising Unpromising Promising Promising

Target Behaviour Chosen


Michie, S., Atkins, L., & West, R. (2014). The behaviour change wheel: A guide to designing interventions London: Silverback Publishing.

Milou FredrixPhD student


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


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.

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

Implementation Science

Behavioural Science

Public and Patient

Involvement

Diabetes Research Prioritisation-Positives

Photo by Sam Ilić - Creative Commons Attribution-NonCommercial License https://www.flickr.com/photos/40195741@N00 Created with Haiku Deck

Diabetes Research Prioritisation-Negatives

Patient experience

Time limitations

Level of specificity


“Rubik's cube of trying to understand and bring together multiple stakeholder views”


How to meaningfully link and engage with PPI advisors throughout research


Publication and dissemination Generalizability and

representativeness

More focused on diabetes than implementation

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?


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

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

Developing an Intervention to Improve Outcomes for YA with T1D in Ireland

Young Adult Panel Formation

PPI – Best Practice

Photo by NASA Goddard Photo and Video - Creative Commons Attribution License https://www.flickr.com/photos/24662369@N07 Created with Haiku Deck

• 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

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

[email protected]

[email protected]

@jenmcsharry

mailto:[email protected]

mailto:[email protected]

identifying and prioritising behavioural targets for research in diabetes consensus from people...

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