What could be improved

LayLonger day to do morec

Greater lay & professional integrationMore notice of session content

ProfessionalPresent evidence baseChoice about group allocationVideo examples of the intervention

Engaging patient and professional stakeholders Engaging patient and professional stakeholders to develop a complex interventionto develop a complex intervention

Lessons learned from The DEPICTED StudyLessons learned from The DEPICTED Study

Principal investigators: John Gregory1, Mike Robling2,3. Project team: Rachel McNamara2,3, Kristina Bennert2,3, Helen Hambly2,3, Veronica Dunning2,3. Co-applicants: Kerenza Hood2,3, Steve Rollnick3, Chris Butler3, Sue Channon4, Lesley Lowes5, David Cohen6, Mirella Longo6, Ian Russell7, Charlotte Crawley8, Liz Crowne9. 1 Dept Child Health, Cardiff University; 2 South East Wales Trials Unit; Cardiff University 3 Dept Primary Care & Public Health, Cardiff University; 4 Cardiff & Vale NHS Trust; 5 School of Nursing & Midwifery Studies, Cardiff University; 6 School of Care Sciences, University of Glamorgan; 7 Institute of Medical and Social Care Research, University of Wales, Bangor; 8 Lay representative; 9 United Bristol Healthcare Trust

BackgroundThe DEPICTED study is developing a blended learning programme called ‘Talking Diabetes’ comprising e-learning and face-to-face workshops.The programme teaches consultation strategies and skills for optimising behaviour change in young people with diabetes.Active engagement with professional and lay stakeholders was a key feature in the development process.

What participants valued

LayChance for child to reflect on own conditionBeing actively listened toa

ProfessionalEnthusiastic & generous researchersAddressing the research challengeLearning about study

BothBeing involved / contributing to a processMeeting & hearing from othersb

Opportunity to influence practiceTracking development process of the research

Stakeholder Action Group (SAG)Aim: to review and advise the research team on design and implementation options for the developing study intervention and evaluative trial.

The advisory group: SAG membership was chosen to reflect key stakeholder perspectives on living with diabetes, and behaviour change in childhood and adolescence. Lay members included teenage patients, adult patients, parents of younger and older children and representation from Diabetes UK. Professional members included representation from general practice, paediatrics, clinical psychology, social work, psychiatry, specialist nursing, dietetics, school nursing. Members were drawn from a variety of services / areas in England and Wales.

Research team: A professional facilitator worked with the core research group (KB, HH, MR, JG) to plan and manage each meeting. The wider multi-disciplinary team attended and co-facilitated the meetings.

The SAG meetings: Three day-long meetings were run on weekends over 10 months in 2006. A variety of approaches were used in running each meeting:

Parent a: “All of the group work and feeling you are helping towards a worthwhile goal. Having my ideas listened to and taken on board.” Patient b: “Listening to other people's ideas and helping design the tool.”

Parent c: “I don’t think so- no- it has all been well organised- maybe have a longer day to get more in.”

How did stakeholders contribute?

Identifying barriers and facilitators to evaluation phase participation and

retention

Assess general feasibility and acceptability of planned

interventionContribute to detailed graphic design and usage guidelines for patient agenda-tool

Contribute to research protocol for evaluation

phase: identifying outcomes for patients

and professionalsNaming competition for patient agenda-

setting tool

Interim newsletters

Lay, professional & mixed groups

Plenary presentations

Formal evaluation

Small group discussionPoster

displays

Feedback – verbal / flipchart

Voting stands

Presenting author: Dr Mike Robling, Dept of Primary Care & Public Health, Cardiff University

Contacts: Dr Mike Robling: roblingmr@cardiff.ac.ukStudy office: depicted@cardiff.ac.ukStudy website: www.cardiff.ac.uk/depicted

The DEPICTED Study (ISRCTN: 61568050 ) is sponsored and hosted by Cardiff University, and fully coordinated by the South East Wales Trials Unit. The study is funded by the Dept of Health.

Illustrative quotes from lay participants:

Being involved: formal evaluation of participationFollowing the third meeting participant feedback was gathered using a structured evaluation form. What people valued or thought could be changed is shown below with some quotes illustrating selected points.

Key messages

• Lay and professional participation in complex intervention development was successfully achieved.

• Integration of lay and professional participants was more challenging – matching group tasks and group composition was especially important.

• Enabling less forthcoming participants, for example, teenagers

requires particular attention but can also be achieved. Attention to interpersonal family dynamics was important.

• Running sessions requires a lot of preparation and organisation.

• Clarity about individual roles and autonomy in study decision-making is vital – participants and researchers need to know how they can contribute.

How were meetings run?

Each meeting was attended by 13-17 lay, and 10-11 professional participants. Stakeholders contributed to the research process in a variety of ways: