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User Experiences Perspectives and Involvement


Dr Sophie Staniszewska Royal College of Nursing Research Institute, School of Health and Social Studies

Clara Joergensen UNTRAP, Institute of Health, School of Health and Social Studies

The aims of this Research Development group are:

This group, convened from 2008 by Dr Sophie Stanieszewka and Dr Andy Gibson. It exists to promote and explore the involvement of service users in service development, teaching and research in health and social care. The main activities of this group have been to support the development and establishment of two major projects, first the National Centre for Involvement directed by Prof Jonathan Tritter at the University of Warwick and second UNTRAP (see below). In addition there have been some funded research projects awarded, publications and conference papers given. The group intends to resume termly meetings this academic year.

 UNTRAP - Universities/User Teaching and Research Action Partnership - UNTRAP

UNTRAP is an organisation that aims to promote the engagement and involvement of users and carers from the local community in research and teaching in health and social care at the Universities of Warwick and Coventry.

The Forum:

  • enables users to identify their support needs and develop a continuing partnership with the academic institutions in the area,
  • facilitates dialogue between users, health and social care teachers and researchers and also between universities and trusts,
  • supports the development of best practice and will support the development of excellence in teaching and research and ultimately in service provision,
  • engages with a broader, more diverse user population.

The UNTRAP Steering Committee meets every six weeks. The members are involved in teaching and research activities. They are involved in committees as user representatives within Warwick Medical School, the Social Work courses at the Universities of Warwick and Coventry and are active on external research funding and ethics committees as well as advisory groups of research projects. Members of UNTRAP are regularly invited to be involved in medical school teaching, for example the induction of the Warwick Medical School course, Learning from Lives.

Funding from the UHCW (University Hospitals Coventry and Warwickshire), the Higher Education Infrastructure Fund (HEIF2) and from the VC Innovation in Teaching Fund has supported administrative costs, workshops on involving users in teaching and research for both UNTRAP members and researchers, and the development of audiovisual material for teaching.


2009 - The NCI Annual Survey on PPI – 'What are the structural boundaries to successful implementation of involvement?' The NCI Annual Survey series provides data on the state of PPI across the country and is producing an evidence base identifying the real barriers that exist. Dr Sophie Staniszewska, Director of Evidence for Practice, NHS Centre for Involvement. Paper presented at the NCI Summer Conference 2009: 'The future of involvement - putting patients at the heart of services' on 2nd July.

2009 - Seminar 'Contesting Health Policy: Tensions Between Choice and Involvement in England and the EU', Professor Jonathan Tritter (NHS Centre for Involvement).

2008 - UNTRAP Open Day.

2007 – National Seminar on User Involvement in HealthCare funded by HEA Subject Centre for Medicine, Dentistry and Veterinary Medicine with the Universities of Newcastle, Leeds, St Georges Medical School

2006 -Association of Medical Education Conference – Aberdeen – Paper jointly presented by Dr Ann Jackson, University of Warwick, Keith Bell (UNTRAP) and David Simson (UNTRAP)

2006 - UNTRAP Open Day – Building Local Partnerships for Teaching & Research in Medicine, Health & Social Care: UNTRAP - University of Warwick. Fifty-five participants attended the UNTRAP open day. The guest speaker was Sir Donald Irvine (Picker Institute Europe, former President of the General Medical Council). The day was described as being ‘buoyant, engaging and highly emotive’, fourteen new members were recruited. A comment from one participant reflected the mood of the day: ‘UNTRAP is redemptive because it turns negative experiences into positive ones’.

2006- Association of International Medical Education – Genoa – Dr Ann Jackson and Dr Loraine Blaxter

2005- Presentation at the Nuffield Trust seminar on patient centred professionalism - Professor Gillian Hundt

Research Projects

Title: User Involvement on Neonatal Network Boards

PI and Co Applicants: Professor Gillian Hundt, Loraine Blaxter, Andrew Gibson

Funders: WMSSA, BLISS, The Grace Research Fund

Dates: April 2006- March 2008

Title: Quality and continuity of End of Life care between home, nursing homes and district hospitals: A nurse led action research project examining patient pathways from home or nursing homes via A&E wards

PI: Dr Ann Jackson, Professor Gillian Hundt.

Funding body: The Burdett Trust for Nursing Grant

Dates: September 2006-August 2008

Amount: £60,000

Title: Social Identity and Khat in Uganda

PI: Dr Susan Beckerleg

Funding Body: ESRC

Dates: July 2007 – June 2009

Amount: £207,632

Title: Improving Acess to Care for Marginal rural Peoples: Bedouin in Jordan and Lebanon

PI: Professor Gillian Hundt, Research Fellow: Dr Salah Alzaroo

Funding Body European Commission

Dates: January 2006-December 2010

Amount I million Euro

Title: The quality of life of visually impaired children - investigation and development of a novel vision-related quality of life instrument

PI : Dr Jugnoo Rahi, Institute of Child Health, UCL

Co-Investigators:Gillian Lewando Hundt Hundt (University of Warwick), Phillipa Cumberland (Institute of Child Health), David Taylor (Institute of Child Health), Anthony Moore (Institute of Ophthalmology/Moorfield's Eye Hospital), Peng Tee Khaw (Institute of Ophthalmology/Moorfield's Eye Hospital), Alison Salt (Great Ormond Street Hospital) and Naomi Dale (Great Ormond Street Hospital)

Research Fellows: Sarah Keeley (Warwick), Helen Owen ( UCL)

Funder: Guide Dogs for the Blind Association

Amount: £98,000 (£33,000 for Warwick)

Title: In-patient staff morale: a national investigation

PI Dr Sonia Johnson, UCL. Co-applicants include Professor Gillian Hundt (SHSS) and Dr Moli Paul ( WMS).

Funding body: NHS Service Delivery and Organisation (SDO) National R & D Programme.

Amount: £296,999

Duration: 25 months.

Selected Publications

User Perspectives

Beckerleg S., Lewando Hundt G. (2005) ‘Women Heroin Users: Exploring the Limitations of the Structural Violence Approach,’ International Journal of Drug Policy 16 (3) 183-190

Chatty D, Lewando Hundt G. (2005) Children of Palestine: Experiences of Forced Migration. Berghahn Press, New York, Oxford (Edited book)

Lewando Hundt G. et al 2006. Navigating the troubled waters of prenatal testing decisions pp. 25-39 in New Technologies in Health Care: Challenge, Change and Innovation Ed. A. J.Webster Palgrave Basingstoke.

Thorogood, M. Connor, D. Lewando Hundt, G. Tollman, S.M. (2007) Understanding and managing hypertension in an African sub-district: A multi-disciplinary approach, Scandinavian Journal of Public Health :Health, population and social transitions in rural South Africa. Vol 35 Supplement 69: 52-59

Rahi J.S., Manaras I, Tuomainen H., Lewando Hundt G. (2005) Health services experiences of parents of recently diagnosed visually impaired children, British Journal of Ophthamology, 89: 213-218

Williams, C. Sandall, J. Lewando Hundt, G. Grellier, R. Heyman, B, Spencer, K. (2005) ‘Women as ‘moral pioneers’?: experiences of first trimester nuchal translucency screening’, Social Science and Medicine, 61: 1983-92.

Heyman B,,Lewando Hundt G, Sandall J., Spencer K., Williams C., Grellier R., Pitson L.,(2006) On Being At Higher Risk: A Qualitative Study Of Prenatal Screening For Chromosomal Anomalies in press Social Science and Medicine. 62 2360 -72

 User Involvement

Staniszewska, S. and Henderson, L. (2005) ‘The complexity of patient evaluation - The influence of contextual factors and the importance of engagement’, Journal of Advanced Nursing, 49 (6): 690-692.

Staniszewska, S., Jones N., Newburn, M. and Marshall, S. (2007) ‘User involvement in the development of a research bid: Benefits, barriers and enablers’, Health Expectations, 10(2): 173-183 ISSN 1369-6513

Tritter, J. and Lester, H.E. (2007) “Health Inequalities and User Involvement”. In Elizabeth Dowler & Nick Spencer (eds.) Challenging Health Inequalities: Multi-disciplinary perspectives. Bristol: Policy Press. (Accepted for publication).

Anderson, E., Tritter, J. and Wilson, R. (eds.) (2006) Healthy Democracy: The future of involvement in health and social care. London: INVOLVE and NHS Centre for Involvement.

Tritter, J. and Brittain, I. (2006) “The NHS Centre for Involvement: The Evolution of Patient and Public Involvement”. Andersonn, E., Tritter, J. and Wilson, R. (eds.) (2006) Healthy Democracy: The future of involvement in health and social care. London: INVOLVE and NHS Centre for Involvement.

Lester H.E., Lynda Tait, Elizabeth England and Tritter, J. (2006) Patient involvement in primary care mental health: a focus group study”. British Journal of General Practice. 56 527: 415-422.

Tritter, J. (2006) ‘Multidisciplinary and mixed methods research in health’, in Saks, M. and Allsop, J. (eds.) Researching Health. London: Sage. (in press).

McKie, L. and Tritter, J. (2006) ‘Project Management’, in Gilbert, N. (ed.) From Postgraduate to Social Scientist: A Guide to Key Skills. London: Sage. (in press).

Tritter, J. (2006) “Patient-Centred Healthcare: Contesting patient choice and public involvement”. Signaaleja, Stakesin tulevaisuusraportti, Työpaperieita 8/2006, Helsinki Finland: STAKES: 37-44.

Tritter, J. and McCallum, A. (2006) The Snakes and Ladders of User Involvement: Moving beyond Arnstein”. Health Policy 76 2: 156-168.

Parker, A. and Tritter, J. (2006) “Focus group methods and methodology: Current practice and recent debates”. International Journal of Research and Method in Education 29 1: 23-37.

Lester H.E., Tritter, J. and Sorohan, H. (2005) Providing “good enough” primary care for people with serious mental illness- a focus group study”. British Medical Journal 330: 1122-1127. Awarded 2005 RCGP and Boots The Chemists Research Paper of the Year

Lester H.E. and Tritter, J. (2005) “Listen to my madness: understanding the views of people with serious mental illness through a disability framework”. Sociology of Health and Illness 27 5: 649-669.

Tritter, J. (2005) ‘Negotiating access and establishing expertise’, in Hallowell, N., Lawton, J. and Gregory, S. (eds.) Reflections on Research: The realities of doing research in the social sciences. Maidenhead: Open University Press.