What could be improved Lay Longer day to do more c Greater lay & professional integration

1. Engaging patient and professional stakeholders to develop a complex intervention Lessons learned from The DEPICTED Study Voting stands Feedback – verbal / flipchart Plenary presentations Small group discussion Poster displays Lay, professional & mixed groups Interim newsletters Formal evaluation Assess general feasibility and acceptability of planned intervention Contribute to detailed graphic design and usage guidelines for patient agenda-tool Contribute to research protocol for evaluation phase: identifying outcomes for patients and professionals Identifying barriers and facilitators to evaluation phase participation and retention Naming competition for patient agenda-setting tool Presenting author: Dr Mike Robling, Dept of Primary Care & Public Health, Cardiff University 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 • Background • The 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. Being involved: formal evaluation of participation Following 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. • What participants valued • Lay • Chance for child to reflect on own condition • Being actively listened toa • Professional • Enthusiastic & generous researchers • Addressing the research challenge • Learning about study • Both • Being involved / contributing to a process • Meeting & hearing from othersb • Opportunity to influence practice • Tracking development process of the research • What could be improved • Lay • Longer day to do morec • Greater lay & professional integration • More notice of session content • Professional • Present evidence base • Choice about group allocation • Video examples of the intervention 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: Illustrative quotes from lay participants: 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 were meetings run? • 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. Each meeting was attended by 13-17 lay, and 10-11 professional participants. Stakeholders contributed to the research process in a variety of ways: How did stakeholders contribute? 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. Contacts: Dr Mike Robling: roblingmr@cardiff.ac.uk Study office: depicted@cardiff.ac.uk Study website: www.cardiff.ac.uk/depicted