Involving people affected by cancer in research: A review of literature: Review article

European Journal of Cancer Care

Volumn 17, Issue 3, 2008, Pages 233-244

  Hubbard, G ^a   Kidd, L ^a   Donaghy, E ^a  

^a UNIVERSITY OF STIRLING   (United Kingdom)

Author keywords

Cancer; Participatory research; User involvement

Indexed keywords

ARTICLE; DECISION MAKING; EVIDENCE BASED MEDICINE; HEALTH CARE PLANNING; HEALTH CARE POLICY; HEALTH SERVICE; HUMAN; METHODOLOGY; NEOPLASM; ONCOLOGY; PATIENT PARTICIPATION; PSYCHOLOGICAL ASPECT; RESEARCH;

DECISION MAKING; EVIDENCE-BASED MEDICINE; HEALTH PLANNING; HEALTH POLICY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MEDICAL ONCOLOGY; NEOPLASMS; PATIENT PARTICIPATION; RESEARCH; RESEARCH DESIGN;

EID: 42449144806     PISSN: 09615423     EISSN: 13652354     Source Type: Journal    
DOI: 10.1111/j.1365-2354.2007.00842.x     Document Type: Article

References (73)

1. Andejeski Y., Bisceglio I., Dickersin K., Johnson J., Robinson S., Smith H., Visco F. Rich I. (2002a) Quantitative impact of including consumers in the scientific review of breast cancer research proposals. Journal of Women's Health and Gender-Based Medicine 11, 379 388.
2. Andejeski Y., Breslau E.S., Hart E., Lythcott N., Alexander L., Rich I., Bisceglio I., Smith H.S. Visco F.M. (2002b) Benefits and drawbacks of including consumer reviewers in the scientific merit review of breast cancer research. Journal of Women's Health and Gender-Based Medicine 11, 119 136.
3. Australian Council for Safety and Quality in Health Care (2005). Partnerships for Health in Action: Promoting Consumer and Community Involvement in Health Care Improvement. Australian Commission for Safety and Quality in Health Care, Australia. Available at: http://www.safetyandquality.gov.au/ internet/safety/publishing.nsf/content/c06811ad746228e9ca2571c600835dbb/ $file/consumrept0705.pdf (accessed 2007).
4. Baum M. (1997) Who truly represents the needs of the consumer diagnosed with breast cancer? Who are these patients' advocates? How are they informed? What, if any, are their secret agendas? European Journal of Cancer 33, 807 808.
5. Baum M. Thornton H. (2001) Women's advocacy groups and research in breast cancer. The Breast Journal 10 (Suppl. 3 19 22.
6. Baum M., Buchanan M., Baselga J., Cataliotti L., Jassem J. Piccart M. (2002) The Statement of Barcelona, the future of breast cancer research in danger. European Journal of Cancer 38, 2210 2213.
7. Beresford P. (2005) Developing the theoretical basis for service user/survivor-led research and equal involvement in research. Epidemiologica Psichiatria Sociale 14, 4 9.
8. Bourke L. (2002) Participatory research in breast cancer: a case study in regional Victoria. Contemporary Nurse. 12, 246 252.
9. Bradburn J., Maher J., Adewuyi-Dalton R., Grunfeld E., Lancaster T. Mants D. (1995) Developing clinical trial protocols: the use of patient focus groups. Psycho-Oncology 4, 107 112.
10. Burhansstipanov L., Gilbert A., LaMarca K. Krebs L. (2001) An innovative path to improving cancer care in Indian country. Public Health Reports 116, 424 433.
11. Chen A., Wismer B., Lew R., Kang S., Min K., Moskowitz J. Tager I. (1997) Health is strength: a research collaboration involving Korean Americans in Almeda country. American Journal of Preventive Medicine 13 (Suppl. 6 93 100.
12. Collyar D. (2005) How have patient advocates in the United States benefited cancer research? Nature Reviews Cancer 5, 73 78.
13. Danieli A. Woodhams C. (2003) Emancipatory research methodology and disability: a critique. International Journal of Social Research Methodology 8, 281 296.
14. Davenport-Ennis N., Cover M., Ades T. Stovall E. (2002) An analysis of advocacy: a collaborative essay. Seminars in Oncology Nursing. 18, 290 296.
15. Davis C., Salo L. Redman S. (2001) Evaluating the effectiveness of advocacy training for breast cancer advocates in Australia. European Journal of Cancer Care 10, 82 86.
16. Department of Health. (2005) Research Governance Framework for Health and Social Care, 2nd edn. Department of Health, London, UK.
17. Dewey J. (1963) Experience and Education. Collier and Macmillan, London, UK.
18. Dixon-Woods M., Kirk D., Agarwal S., Annandale E., Arthur T., Harvey J., Hsu R., Katbamna S., Olsen R., Smith L., Riley R. Sutton A. (2005) Vulnerable groups and access to health care: a critical interpretive review. Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO), NCCSDO, London, UK. Available at http://www.sdo.lshtm.ac.uk/files/ project/25-final-report.pdf (accessed 2007).
19. FDA (2005) FDA Patient Representative Program. Available at: http://www.fda.gov/oashi/patrep/patientrep.html (accessed 2007).
20. Fouad M., Partridge E., Wynn T., Green B., Kohler C. Nagy S. (2001) State-wide Tuskegee alliance for clinical trials. CANCER 91 (Suppl. 1 237 241.
21. Freire P. (1985) The Politics of Education: Culture, Power and Liberation. Bergin and Garvey, New York, NY, USA.
22. Gray R.E., Fitch M., Davis C. Phillips C. (2000) Challenges of participatory research: reflections on a study with breast cancer self-help groups. Health Expectations 3, 243 252.
23. Hanley B., Bradburn J., Barnes M., Evans C., Goodare H., Kelson M., Kent A., Oliver S., Thomas S. Wallcraft J. (2004) Involving the Public in NHS, Public Health, and Social Care Research: Briefing Notes for Researchers, 2nd edn. INVOLVE, Hampshire, UK.
24. Hassey Dow K., Ferrell B., Leigh S. Melancon C. (1997) The cancer survivor as co-investigator. Cancer Practice 5, 255 257.
25. Health Canada 2006) Our Policy. Available at: http://www.hc-sc.gc.ca/ahc- asc/public-consult/resource-centre-ressource/poli/index_e.html (accessed 2007).
26. Hinestrosa M. (2001) How cancer service users can influence research and practice. Woman, Cancer, Community 3, 26.
27. Hubbard G., Kidd L., Donaghy E., McDonald C. Kearney N. (2007) A review about involving people affected by cancer in research, policy and planning and practice. Patient Education and Counseling 65, 21 33.
28. Hunt J., Stevens T., Mitchell N., Wilde D. Ahmedzai S. (2002) How cancer service users can influence research and practice. Nursing Times 98, 32 33.
29. INVOLVE (2006a) Peer reviewing research proposals: Guidelines for Members of the Public. P2. INVOLVE, Hampshire, UK.
30. INVOLVE (2006b) Getting Involved in Research Grant Applications: Guidelines for Members of the Public P1. INVOLVE, Hampshire, UK.
31. Khanlou N. Peter E. (2005) Participatory action research: considerations for ethical review. Social Science and Medicine 60, 2333 2340.
32. Kolb D.A. (1984) Experiential Learning: Experience as the Source of Learning and Development. Prentice Hall, Englewood Cliffs, NJ, USA.
33. Lancet (2001) How consumers can and should improve clinical trials. Lancet 357, 1721.
34. Langer A. (1997) The role of advocacy in cancer research: not a monster, national alliance of breast cancer organizations. Cancer Investigation 15, 500 502.
35. Lymphoma Today (2003) Advocacy 101: demystifying the world of advocacy. Lymphoma Today 2, 10.
36. Macaulay A., Commanda L., Freeman W., Gibson N., McCabe M., Robbins C. Twohig P. (1999) Participatory research maximises community and lay involvement. British Medical Journal 319, 774 778.
37. McCormick S., Brody J., Brown P. Polk R. (2004) Public involvement in breast cancer research: an analysis and model for future research. International Journal of Health Services 34, 625 646.
38. McNeil C. (2001) Cancer advocacy evolves as it gains seats on research panels. Journal of the National Cancer Institute 93 (Suppl. 4 257 259.
39. Marsden J., Bradburn J. Jackson L. (2004) Patient and clinician collaboration in the design of a national randomized breast cancer trial. Health Expectations 7, 6 17.
40. Matsunaga D., Enos R., Gotay C., Banner R., DeCambra H., Hammond O., Hedlund N., Haban E., Issell B. Tsark J.A. (1996) Participatory research in native hawaiian community. American Cancer Society 78, 1582 1586.
41. Miles M. Huberman M. (1994) Qualitative Data Analysis: an Expanded Sourcebook. Sage, London, UK.
42. National Breast Cancer Coalition (2006) NBCC's Innovative Science Program for Breast Cancer Activists. Available at: http://www.natlbcc.org/biin/index. asp?Strid=482&depid=7 (accessed 2006).
43. National Cancer Institute (2006) About CARRA/What is CARRA, and Who Are CARRA Members. Available at: http://carra.cancer.gov/about/whatiscarra (accessed 2006).
44. National Cancer Research Institute (2005) Cancer Conference Bursary. Available at: http://www.ncri.org.uk/ncriconference/registration.cfm?navid= 3&menuid=34 (accessed 2005).
45. National Cancer Research Institute Clinical Studies Groups (2006) Clinical Studies Groups. Available at: http://www.ncrn.org.uk/Csg/index.asp (accessed 2006).
46. National Cancer Research Institute Consumer Liaison Group (2004) Annual Report. Available at: http://www.ncrn.org.uk/ (accessed 2005).
47. National Institute for Health (2007) Public Involvement with NIH. Available at: http://www.nih.gov/about/publicinvolvement.htm (accessed 2007).
48. NCRI/NCRN (2005) Think-Tank on Consumer Involvement in Cancer Research. Available at: http://www.ncrn.org.uk/csg/thinktank.doc (accessed 2005).
49. Noblit G. Hare R. (1988) Meta-Ethnography: Synthesizing Qualitative Studies. Sage, Newbury Park, CA, USA.
50. North Trent Cancer Research Network Consumer Research Panel (NTCRN CRP) (2005) Patient and Public Involvement. Available at: http://www.sheffield- paliative.org.uk/Research/PatientAndPublicInvolvement/crp.html (accessed 2005).
51. Norton L., Lauder E. Kettering S. (1998) Breast cancer advocates in clinical research: a trialist's perspective. Breast Disease 10, 51 59.
52. PAC. (2001) Patient advocacy committee. International Journal of Radiation Oncology, Biology, Physics 51, 120 121.
53. Parboosingh J., Stachencko S. Inhaber S. (1997) A model of consumer participation: the Canadian breast cancer initiative. Canadian Journal on Aging/Canadian Public Policy/Supplement 16, 177 186.
54. Platner J., Bennett L., Millikan R. Barker M. (2002) The partnership between breast cancer advocates and scientists. Environmental and Molecular Mutagenesis 39, 102 107.
55. Plumb M., Price W. Kavanaugh-Lynch M. (2004) Funding community-based participatory research: lessons learned. Journal of Interprofessional Care 18, 428 439.
56. Plummer P., Jackson S., Konarski J., Mahanna E., Dunmore C., Regan G., Mattingly D., Parker B., Williams S., Andrews C., Vannapppagari V., Hall S., Deming S., Hodgson E., Moorman P., Newman B. Millikan R. (2002) Making epidemiologic studies responsive to the needs of participants and communities: the Carolina breast cancer study experience. Environmental and Molecular Mutagenesis 39, 96 101.
57. Psillidis L., Flach J. Padberg R. (1997) Participants strengthen clinical trial research: the vital role of participant advisors in the breast cancer prevention trial. Journal of Women's Health 6, 227 232.
58. Redmond K. (2003) Collaboration with patient advocates: unleashing a potent force. BJU International 91, 590 591.
59. Schon D. (1983) The Reflective Practitioner: How Professionals Think in Action. Harper Collins, London, UK.
60. Scottish Executive (2006) Research Governance Framework for Health and Social Care, 2nd edn. Scottish Executive, Edinburgh, UK.
61. Smith A., Christopher S. McCormick A. (2004) Development and implementation of a culturally sensitive cervical health survey: a community-based participatory approach. Women and Health. 40, 67 86.
62. SPORE (2006) Welcome to the Patient Advocate Reserch Team (PART) Programme. Available at: http://spores.nci.nih.gov/part/index_part.html (accessed 2007).
63. Stevens T. Oliver A. (2004) Development and Evaluation of a collaborative Model for Consumer Research Panels in Cancer Research Networks. Available at: http://invo.org.uk/presentations/consumer_research_panels.ppt (accessed 2005).
64. Stevens T., Wilde D., Hunt J. Ahmedzai S. (2003) Overcoming the challenges to consumer involvement in cancer research. Health Expectations. 6, 81 88.
65. Thornton H. (1999) FOCUS: consumers advisory group for clinical trials. British Oncological Association News 2, 3.
66. Thornton H. (2002) Patient perspectives on involvement in cancer research in the UK. European Journal of Cancer Care 11, 205 209.
67. Thomson C. (2002). Public Consultation and the National Health and Medical Research Council. Available at: http://www.nhmrc.gov.au/consult/_files/ publco.pdf (accessed 2007).
68. Vanchieri C. (2004) Patient advocates help researchers avoid 'Bumps in the Road'. Journal of National Cancer Institute 90, 1193 1195.
69. Worth A., Rowa-Dewar N., Hubbard G. Kearney N. (2005) Phase 1 Report: Patient Advisory Groups. Cancer Care Research Centre, University of Stirling, Stirling, UK.
70. Wright D., Corner J., Hopkinson J. Foster C. (2006) Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda. Health Expectations 9, 3 12.
71. Young K. Sarna L. (2004) An intervention to increase mammography use by Korean. American Women 31, 105 110.
72. Zakarian B. (1998) Toward a new agenda for advocacy. Cancer Investigation 16, 203 210.
73. Zebrack B. (2001) An advocate's perspective on cancer survivorship. Seminars in Oncology Nursing 17, 284 287.