From awareness to involvement? A qualitative study of respiratory patients' awareness of health service change

Health Expectations

Volumn 14, Issue 3, 2011, Pages 321-333

  Kielmann, Tara ^a   Huby, Guro ^a   Powell, Alison ^a   Sheikh, Aziz ^a   Price, David ^b   Williams, Sian ^c   Pinnock, Hilary ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

^b UNIVERSITY OF ABERDEEN   (United Kingdom)

^c Independent User Consultant   (United Kingdom)

Author keywords

Long term conditions; Patient awareness; Patient involvement; Reconfiguration of services; Respiratory care

Indexed keywords

ADULT; AGED; ARTICLE; AWARENESS; COMMUNITY CARE; FEMALE; HEALTH CARE DELIVERY; HEALTH PERSONNEL ATTITUDE; HUMAN; INFORMATION PROCESSING; INTERVIEW; MALE; MIDDLE AGED; NATIONAL HEALTH SERVICE; ORGANIZATION AND MANAGEMENT; PATIENT PARTICIPATION; PROFESSIONAL STANDARD; PSYCHOLOGICAL ASPECT; RESPIRATORY TRACT DISEASE; STATISTICS; UNITED KINGDOM;

ADULT; AGED; AGED, 80 AND OVER; ATTITUDE OF HEALTH PERSONNEL; AWARENESS; COMMUNITY NETWORKS; DELIVERY OF HEALTH CARE; FEMALE; FOCUS GROUPS; GREAT BRITAIN; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PATIENT PARTICIPATION; PROFESSIONAL ROLE; RESPIRATORY TRACT DISEASES; STATE MEDICINE;

EID: 80051558599     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/j.1369-7625.2010.00631.x     Document Type: Article

References (55)

1. House of Commons Health Committee. Patient and Public Involvement in the NHS. London: The Stationery Office Limited, 2007.
2. World Health Organisation. Ninth Futures Forum on Health Systems Governance and Public Participation. Geneva: WHO, 2006.
3. Department of Health. Creating a Patient-Led NHS: Delivering the NHS. London: Department of Health, 2005.
4. Transition Advisory Board. Patient and Public Involvement in Health. Key Messages for the Commission for Patient and Public Involvement in Health and the Department of Health. London: Department of Health, 2002.
5. Department of Health. The NHS Plan: A Plan for investment, A Plan for Reform. London: The Stationery Office, 2000.
6. Department of Health. Our NHS Our Future: NHS Next Stage Review - Interim Report. London: The Stationery Office, 2007.
7. Department of Health. Our Health, Our Care, Our Say: A New Direction for Community Services. London: The Stationery Office, 2006.
8. Department of Health. The NHS Improvement Plan: Putting People at the Heart of Public Services. London: The Stationery Office, 2004.
9. Audit Commission. Quicker Treatment Closer to Home: Primary Care Trusts' Success in Redesigning Care Pathways. London: Audit Commission, 2004.
10. Department of Health. Our Health, Our Care, Our Say - One Year On. London: The Stationery Office, 2007.
11. Craig GM. Involving users in developing health services. BMJ, 2008; 336: 286-287.
12. Hogg C. Patient and public involvement: what next for the NHS? Health Expectations, 2007; 10: 129-138.
13. Hui A, Stickley T. Mental health policy and mental health service user perspectives on involvement: a discourse analysis. Journal of Advanced Nursing, 2007; 59: 416-426.
14. Haigh C. Exploring the evidence base of patient involvement in the management of health care services. Journal of Nursing Management, 2008; 16: 452-462.
15. Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ, 2007; 335: 24-27.
16. Donaldson A, Lank E, Maher J. Sharing experiences of user involvement in shaping new services: the story of a national patient group. Familial Cancer, 2007; 6: 249-256.
17. Coulter A. Patient engagement: why is it important? In: Andersson E, Tritter J, Wilson R (eds) Healthy Democracy: The Future of Involvement in Health and Social Care. London: Involve and NHS National Centre for Involvement, 2006: 27-35.
18. Fudge N, Wolfe CDA, McKevitt C. Assessing the promise of user involvement in health service development: ethnographic study. BMJ, 2008; 336: 313-317.
19. Challans E. How can users be involved in service improvement in health and social care, and why is this important? Journal of Integrated Care Pathways, 2006; 10: 49-58.
20. Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Systematic Reviews 2006, Issue 3. Art. No.: CD004563, doi.
21. Crawford MJ, Rutter D, Manley C et al. Systematic review of involving patients in the planning and development of health care. BMJ, 2002; 325: 1263-1267.
22. Anderson E, Shepherd M, Salisbury C. Taking off the suit: engaging the community in primary health care decision-making. Health Expectations, 2006; 9: 70-80.
23. Gold SK, Abelson J, Charles CA. From rhetoric to reality: including patient voices in supportive cancer care planning. Health Expectations, 2005; 8: 195-209.
24. Florin F, Dixon J. Public involvement in health care. BMJ, 2004; 328: 159-161.
25. Evans S, Tritter J, Barley V et al. User involvement in UK cancer services: bridging the policy gap. European Journal of Cancer Care, 2003; 12: 331-338.
26. McKenna H, Keeney S. Community nursing: health professional and public perceptions. Journal of Advanced Nursing, 2004; 48: 17-25.
27. Baggott RA. A funny thing happened on the way to the forum? Reforming patient and public involvement in the NHS in England. Public Administration, 2005; 83: 533-551.
28. Brooks F. Nursing and public participation in health: an ethnographic study of a patient council. International Journal of Nursing Studies, 2008; 45: 3-13.
29. Gagliardi AR, Lemieux-Charles L, Brown A, Sullivan T, Goel V. Barriers to patient involvement in health service planning and evaluation: an exploratory study. Patient Education and Counseling, 2008; 70: 234-241.
30. Thompson AGH. The meaning of patient involvement and participation in health care consultations: a taxonomy. Social Science and Medicine, 2007; 64: 1297-1310.
31. Murie J, Douglas-Scott G. Developing an evidence base for patient and public involvement. Clinical Governance: An International Journal, 2004; 9: 147-154.
32. Harrison S, Dowswell G, Milewa T. Guest editorial: public and user 'involvement' in the UK National Health Service. Health and Social Care in the Community, 2002; 10: 63-66.
33. Thompson AGH. Moving beyond the rhetoric of citizen involvement: strategies for enablement. Eurohealth, 20032004; 9: 6-9.
34. Williams S for IMPRESS. NHS Jargon Buster: Version 2. London: British Thoracic Society, 2008. Available at:, accessed 20 August 2010.
35. Pinnock H, Huby G, Powell A et al. The Process of Planning, Development and Implementation of a General Practitioner with a Special Interest Service in Primary Care Organisations in England and Wales: A Comparative Prospective Case Study. Report for the NHS Service Delivery and Organisation R&D Programme. London, 2008. Available at: #, accessed 20 August 2010.
36. Kielmann T, Tierney A, Porteous R, Huby G, Sheikh A, Pinnock H. The Department of Health's Research Governance Framework remains an impediment to multi-centre studies: findings from a national descriptive study. Journal of the Royal Society of Medicine, 2007; 100: 234-238.
37. Hamilton S, Huby G, Tierney A et al. Mind the gap between policy imperatives and service provision: a qualitative study of the process of respiratory service development in England and Wales. BMC Health Services Research, 2008; 8: 248.
38. Pinnock H, Huby G, Tierney A et al. Is multi-disciplinary teamwork the key? A qualitative study of the development of respiratory services in the UK. Journal of the Royal Society of Medicine, 2009; 102: 378-390.
39. Stensland P, Malterud K. Approaching the locked dialogues of the body: communicating symptoms through illness diaries. Scandinavian Journal of Primary Health Care, 1999; 17: 75-80.
40. Bernard RH. Research Methods in Anthropology. Lanham: AltaMira Press, 2005.
41. Pope C, Ziebland S, Mays N. Qualitative research in health care: analysing qualitative data. BMJ, 2000; 320: 114-116.
42. Kielmann T, Huby G, Powell A et al. From support to boundary: a qualitative study of the border between self care and professional care. Patient Education and Counseling, 2010; 79: 55-61.
43. NHS Confederation, British Medical Association. New GMS Contract 2003: Investing in General Practice. London: NHS Confederation, British Medical Association, 2003.
44. Murphy E, Dingwall R, Greatbatch D, Parker S, Watson P. Qualitative research methods in health technology assessment: a review of the literature. Health Technology Assessment, 1998; 2: 16.
45. Cutcliffe JR. Reconsidering reflexivity: introducing the case for intellectual entrepreneurship. Qualitative Health Research, 2003; 13: 136-148.
46. BBC News. Failing hospital 'caused deaths', 17 March 2009. Available at.
47. Edemariam A. A hospital is able to tick all the boxes, yet still utterly fail patients. The Guardian, 19 March 2009. Available at.
48. Milewa T, Dowswell G, Harrison S. Partnerships, power and the 'new' politics of community participation in British health care. Social Policy and Administration, 2002; 36: 796-809.
49. Tritter JQ. Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations, 2009; 12: 275-287.
50. Young R. Introducing role and service changes in health and social care: the impact and influence of user involvement in England and Wales. Social Policy and Society, 2006; 5: 249-268.
51. Salter B. Patients and doctors: reformulating the UK health policy community? Social Science and Medicine, 2003; 57: 927-936.
52. Small N. The changing NHS: user involvement and palliative care. In: Monroe B, Olivier D (eds) Patient Participation in Palliative Care. Oxford: Oxford University Press, 2003: 9-22.
53. Brown I. Organizational values in general practice and public involvement: case studies in an urban district. Health and Social Care in the Community, 2001; 9: 159-167.
54. Rhodes P, Nocon A. User involvement and the NHS reforms. Health Expectations, 1998; 1: 73-81.
55. Sang B. Choice, participation and accountability: assessing the potential impact of legislation promoting patient and public involvement in health in the UK. Health Expectations, 2004; 7: 187-190.