Looking both ways – reflections on being a researcher and research commissioner

1. Waqar Ahmad Asst Vice-Chancellor, Middlesex University Looking both ways – reflections on being a researcher and research commissioner

2. Who is the ‘user’ • Diversity of perspectives among researchers and among funders • JRF privileges the end service user • NHS R&D may give equal weight to professionals and service users • The ESRC has a wider definition (or lacks a clear view)

3. Is user involvement universally welcomed? • ‘Objective research’ – contamination, political biases, may compromise integrity of research • Which users to involve: e.g. in disability research – disabled people; parents and ‘carers’; professionals; policy makers

4. Who do I want to influence as a researcher – a personal account • Work that influences policy, practice and empowers participants • Work which advances knowledge in the field • Work which contributes to methods development

5. Example 1: Growing up with sickle cell disorder or beta thalassaemia major • National Lottery Charities Board; project a response to critique of earlier work by young people • Service users (young people, families and organisations – SCD society; UK thal society) and professional involved; engagement from the beginning; also through advisory committees • Consultation on publicity materials, topic guides, approach to participant recruitment • Dissemination through seminars to user groups; conference for young people, parents and professionals simultaneously in Urdu and English and with entertainment; transport and caring costs covered • Separate summaries of findings for young people and parents; professionals; purchasing authorities; and researchers • Articles for SCD News; UK Thalassaemia Society Newsletter

6. … and we produced RAE credible outputs • Ethnicity and Disability: Asian and African-Caribbean Young People with a sickle cell disorder or thalassaemia (National Lottery Charities Board, 32 months from May 1997, £167,000) (Waqar Ahmad, Karl Atkin and Mohammad Iqbal, Al-Falah Youth Centre, Bradford) • Atkin K and Ahmad WIU (2000) 'Pumping iron: compliance with chelation therapy among young people who have thalassaemia major', Sociology of Health and Illness 22(4): 500-24. • Atkin K and Ahmad WIU (2001) 'Living a 'normal ' life: young people living with thalassaemia major or sickle cell disorder', Social Science and Medicine 53(5): 615-626 • Atkin K and Ahmad WIU (2000)'Living with sickle cell disorder: how young people negotiate their care and treatment', in Ahmad WIU (Ed) Ethnicity, Disability and Chronic Illness, Buckingham: Open University Press

7. Example 2: Young South Asian deaf people and identity • Asian young deaf people: agency and identity (ESRC, 18 months, £93,000) (Waqar Ahmad and Dr Lesley Jones) • Developed in close involvement with Asian deaf associations in Bradford and Leeds; close engagement with parents and young people throughout • Engaged participants through BSL, Urdu, Punjabi; also giving them access to professionals • Major methodological challenges – how to collect data from young people with little communication • Close working with a credible Deaf Asian consultant • Dissemination events simultaneously in BSL, Urdu and English, with entertainment, and engagement with professionals • Put deaf people in a position of power by some of the non-Deaf researchers struggling to communicate

8. … and produced RAE credible outputs • Atkin K, Ahmad WIU and J ones L (2002) 'Young Asian deaf people and their families: negotiating relationships and identities', Sociology of Health and Illness, 24(1): 21-45 • Ahmad WIU, Atkin K and Jones L (2002) 'Being deaf and being other things: young Asian people negotiating identities', Social Science and Medicine, 55(10): 1757-1769 • Jones L, Atkin K and Ahmad WIU (2001) 'Supporting Asian deaf young people and their families: the role of professionals and services', Disability and Society 16(1): 51-70

9. Experience of being a research commissioner • Identifying priorities, negotiating with ‘policy customers’ (users) • Fighting for your budget • Dialogue with other funding stakeholders • Systems for procurement and competition • Systems for in-house analysis and project management • Interface between researchers and ‘policy customers’ and ministers • Digesting findings for ministers and officials

10. Some challenges • Mediating expectations between policy and research tribes or even nations • Turning vague notions into research questions • Selling research ideas to ‘policy customers’ • Ongoing dialogue between researchers and policy makers; strong project management • Getting researchers to respect deadlines • Stopping policy colleagues from rewriting the project brief during the conduct of the work • Keeping research current – a particular challenge with long term projects • Getting researchers to write for policy makers (neither impenetrable sociologese nor baby-talk) – short, sharp, rigorous, to-the-point, few provisos • Translating ‘researchees’ into English for ministers and officials

11. Three initiatives to improve researcher-policy interface • Issue of researcher capacity – launched the Joint ESRC/ODPM Studentship and Fellowship Programme –now being emulated by the Welsh Assembly • Poor interface with academia – established four research networks, some jointly with the ESRC • Govertment research too short-term – revamped the New Horizons Programme to address key strategic and medium term research questions (some through the ESRC/ODPM scheme)

12. Marriage of research and action • …is possible • Involving users is a must for this to happen • User engagement in research requires high ethical as well as research standards • Can help produce high quality research • Most funding organisations would support it – but important to know your funder • Requires commitment and resources • Is hugely rewarding – essential if you want to become an Assistant Vice Chancellor! • Diversity of users needs to be kept in mind