User involvement in UK cancer services: bridging the policy gap
Corresponding Author
S. EVANS
research fellow
Faculty of Health and Social Care, University of the West of England, Bristol
Simon Evans, Research Fellow, Faculty of Health and Social Care, University of the West of England, Bristol, BS16 1DD, UK (e-mail: [email protected]).Search for more papers by this authorV. BARLEY
clinical lecturer in clinical oncology and lead clinician
University of Bristol and User Involvement Group, Avon, Somerset and Wiltshire Cancer Services, Bristol
Search for more papers by this authorN. DAYKIN
reader in health sciences
University of the West of England, Bristol
Search for more papers by this authorJ. MCNEILL
head of community links
Macmillan Cancer Relief, London
Search for more papers by this authorN. PALMER
user representative
Project Steering Group, c/o ASWCS, Bristol
Search for more papers by this authorJ. RIMMER
project manager
Avon, Somerset and Wiltshire Cancer Services, Bristol
Search for more papers by this authorM. SANIDAS
research associate
Avon, Somerset and Wiltshire Cancer Services, Bristol
Search for more papers by this authorP. TURTON
director of education and development
Bristol Cancer Help Centre
Search for more papers by this authorCorresponding Author
S. EVANS
research fellow
Faculty of Health and Social Care, University of the West of England, Bristol
Simon Evans, Research Fellow, Faculty of Health and Social Care, University of the West of England, Bristol, BS16 1DD, UK (e-mail: [email protected]).Search for more papers by this authorV. BARLEY
clinical lecturer in clinical oncology and lead clinician
University of Bristol and User Involvement Group, Avon, Somerset and Wiltshire Cancer Services, Bristol
Search for more papers by this authorN. DAYKIN
reader in health sciences
University of the West of England, Bristol
Search for more papers by this authorJ. MCNEILL
head of community links
Macmillan Cancer Relief, London
Search for more papers by this authorN. PALMER
user representative
Project Steering Group, c/o ASWCS, Bristol
Search for more papers by this authorJ. RIMMER
project manager
Avon, Somerset and Wiltshire Cancer Services, Bristol
Search for more papers by this authorM. SANIDAS
research associate
Avon, Somerset and Wiltshire Cancer Services, Bristol
Search for more papers by this authorP. TURTON
director of education and development
Bristol Cancer Help Centre
Search for more papers by this authorAbstract
Recent UK government initiatives aim to increase user involvement in the National Health Service (NHS) in two ways: by encouraging service users to take an active role in making decisions about their own care; and by establishing opportunities for wider public participation in service development. The purpose of this study was to examine how UK cancer service users understand and relate to the concept of user involvement. The data were collected through in-depth interviews, which were analysed for content according to the principles of grounded theory. The results highlight the role of information and communication in effective user involvement. Perhaps more importantly, this study suggests that the concept of user involvement is unclear to many cancer service users. This paper argues the need for increased awareness and understanding of what user involvement is and how it can work.
REFERENCES
-
Arksey H. &
Knight P. (1999) Interviewing for Social Scientists. Sage, London.
10.4135/9781849209335 Google Scholar
- Bakker D.A., Fitch M.I., Gray R., Reed E. & Bennett J. (2001) Patient-health care provider communication during chemotherapy: the perspectives of women with breast cancer. Patient Education and Counselling 43, 61–71.
- Barry C.A., Stevenson F.A., Britten N., Barber N. & Bradley C.P. (2001) Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor–patient communication in general practice. Social Science & Medicine 53, 487–505.
- Bottomley A.J.L. (1997) Breast cancer care: women's experience. European Journal of Cancer Care 6, 124–132.
- Butow P.N., Maclean M., Dunn S.M., Tattersall M.N.H. & Jones Q.J. (1994) Patient participation in the cancer consultation. Annals of Oncology 5, 199–204.
- Charles C., Gafne A. & Whelan T. (1997) Shared decision making in the medical encounter: what does it mean (or it takes at least two to tango). Social Science & Medicine 44 (5), 681–692.
- Degner L.F., Kristajanson L.J., Bowman D., Sloan J.A. , Carriere K.C., O'Neil J., Bilodeau B., Watson P. & Mueller B. (1997) Information needs and decisional preferences in women with breast cancer. Journal of the American Medical Association 277, 1485–1492.
- Department of Health (1990) National Health Service and Community Care Act. HMSO, London.
- Department of Health (1995) Improving the Quality of Cancer Services – A Report by The Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. HMSO, London.
- Department of Health (1998) The New NHS Charter: a Different Approach. Department of Health, Wetherby.
- Department of Health (1999) Patient and Public Involvement in the New NHS. Department of Health, London.
- Department of Health (2000a) Putting Patients First. Department of Health, London.
- Department of Health (2000b) The NHS Plan. Department of Health, London.
- Department of Health (2002) National Health Service Reform and Health Care Professions Act. Department of Health, London.
- Dosanjh S., Barnes J. & Bhandari M. (2001) Barriers to breaking bad news among medical and surgical residents. Medical Education 35, 197–205.
- Entwistle V., Tritter J. & Calnan M. (2002) Researching experiences of cancer: the importance of methodology. European Journal of Cancer Care (Special Issue) 11, 232–237.
- Eriksson E. & Lauri S. (2000) Informational and emotional support for cancer patients’ relatives. European Journal of Cancer Care 9, 8–15.
- Fallowfield L.J. (1998) Communication skills of oncologists. European Journal of Cancer 34 (Suppl. 5), 62.
- Fallowfield L. & Jenkins V. (1999) Effective communication skills are the key to good cancer care. European Journal of Cancer 35 (11), 1592–1597.
- Fallowfield L.J., Ratcliffe D. & Souhami R.L. (1997) Clinicians attitudes to clinical trials in cancer therapy. European Journal of Cancer 33, 2221–2229.
- Ford S., Fallowfield L. & Lewis S. (1996) Doctor–patient interactions in oncology. Social Science & Medicine 42, 1511–1519.
- Gamble K. (1998) Communication and information: the experience of radiotherapy patients. European Journal of Cancer Care 7, 153–161.
- Gattellari M.B., Butow P.N. & Tattersall M. (2001) Sharing decisions in cancer care. Social Science & Medicine 52, 1865–1878.
- Gattellari M., Butow P.N., Tattersall M.H.N., Dunn S.M. & Macleod C.A. (1999) Misunderstanding in cancer patients: why shoot the messenger? Annals of Oncology 10, 39–46.
- Glaser B.S.A. & Strauss A. (1967) The Discovery of Grounded Theory. Aldine, Chicago.
- Guadagnoli E.W.P. (1998) Patient participation in decision making. Social Science & Medicine 47 (3), 329–339.
- Hoyes I. & Means R. (1994) User Involvement. Open plan. Health Service Journal 104, 23.
- Jordan J., Dowswell T., Harrison S., Lilford R. & Mort M. (1998) Whose priorities? Listening to users and the public. British Medical Journal 316, 1668–1670.
- Kendall L. (2001) The Future Patient. Institute for Public Policy Research, London.
- Kruijver I.P., Kerstra A., Bensing J.M. & Van De Wiel H.B. (2001) Nurse–patient communication in cancer care: a review of the literature. Cancer Nursing 23 (1), 20–31.
- Leydon G.M., Boulton M., Moynihan C., Jones A., Mossman J., Boudioni M. & McPherson K. (2000) Cancer patients’ information needs and information seeking behaviour: in depth interview study. British Medical Journal 320, 909–913.
- Lindow V. (1999) Evaluation of the National User Involvement Project. Joseph Rowntree Foundation, Oxford.
- McDonald G. (1998) Judge or jury: involving people in decision making. Health Promotion Internation 13 (4), 273–275.
- Mesters I., Van De Borne B., De Boer M. & Pruyn J. (2001) Measuring information needs among cancer patients. Patient Education and Counselling 43, 253–262.
- Mills M.E. & Sullivan K. (1999) The importance of information giving for patients newly diagnosed with cancer: a review of the literature. Journal of Clinical Nursing 8, 631–642.
- National Cancer Alliance (1996) Patient Centred Cancer Services: What Patients Say. National Cancer Alliance, Oxford.
- Neve H. (1996) Community assessment in general practice. In: Identifying Local Health Needs: New Community Based Approaches (eds P. Burton & I. Harrison). Policy Press, Bristol.
- Ong L.M., De Haes J.C., Hoos A.M. & Lammes F.B. (1995) Doctor–patient communication: a review of the literature. Social Science & Medicine 40 (7), 903–918.
- Peckham S. (1992) Developing a Policy Framework for Community Participation Work Within the NHS. Briefing Paper no. 7. Wessex Research Consortium Institute for Health Policy Studies, University of Southampton, Southampton.
- Pollitt C. (1989) Consuming passions. Health Services Journal 99 (5178), 1436–1437.
- Poulton B. (1999) User involvement in identifying health needs and shaping and evaluating services: is it being realised? Journal of Advanced Nursing 30 (6), 1289–1296.
- Rees C.E. & Bath P.A. (2001) The information needs and source preferences of women with breast cancer and their family members: a review of the literature published between 1988 and 1998. Journal of Advanced Nursing 31 (4), 833–841.
- Sainio C., Eriksson E. & Lauri S. (2001) Patient participation in decision making about care. Cancer Nursing 24 (3), 172–179.
- Small N. & Rhodes P. (1998) Too Ill to Talk? User Involvement and Palliative Care. Routledge, London.
- Stevenson A., Barry C.A., Britten N., Barber N. & Bradley C.P. (2000) Doctor–patient communication about drugs: the evidence for shared decision making. Social Science & Medicine 50, 829–840.
-
Strauss A. (1987) Qualitative Analysis for Social Scientists. Cambridge University Press, Cambridge.
10.1017/CBO9780511557842 Google Scholar
-
Sweetland J. (2000) Users’ perceptions of the impact of information provided by a Consumer Health Information service: an in depth study of six users.
Health Libraries Review
17, 77–82.
10.1046/j.1365-2532.2000.00231.x Google Scholar
- Taylor M. (2000) Patient care (empowerment): a local view. British Medical Journal 320 (17 June), 1663–1664.
- Wenrich M.D., Curtis J.R., Shannon S.E., Carline J.D. & Ambrozy D.M. (2001) Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Archives of Internal Medicine 161 (6), 868–874.
- WHO (1978) Primary Health Care. World Health Organization, Geneva.
- Wilson J. (1999) Acknowledging the expertise of patients and their organisations. British Medical Journal 319, 771–774.
