The patient participation practices described on this website are based on principles that have been shown to improve the quality of health care. For example, the Cochrane Collaboration has conducted meta-analyses of decision aids and consultation support in health care, and concluded that these are beneficial for patients.
Selected Bibliography of Articles Relevant to Patient Participation
Selected articles by Jeff Belkora and colleagues
Belkora, Mindful Collaboration: Prospect Mapping as an Action Research Approach to Planning for Medical Consultations, Department of Engineering-Economic Systems and Operations Research. 1997, Stanford University: Stanford. Available from the UMI dissertation archive.
Sepucha, K, Belkora, J, Mutchnick, S, and Esserman, L, Consultation Planning to Help Patients Prepare for Medical Consultations: Effect on Communication and Satisfaction for Patients and Physicians.Journal of Clinical Oncology, 2002.20: p. 2695-2700
Sepucha, KR, Belkora, JK, Aviv, C, Mutchnik, S, and Esserman, LJ, Improving the quality of decision making in breast cancer: consultation planning template and consultation recording template.Oncol Nurs Forum, 2003.30: p. 99-106
Belkora, J. Use of the Decision Dialogue Process for Improving the Quality of Medical Decisionsin HIC 2003: Eleventh National Health Informatics Conference. 2003. Auckland, New Zealand. http://search.informit.com.au/documentSummary;dn=936349164604705;res=E-LIBRARY
Belkora, J, Katapodi, M, Moore, D, Franklin, L, Hopper, K, and Esserman, L. Evaluation of a visit preparation intervention implemented in two rural, underserved counties of Northern California. Patient Educ Couns, 2006.64: p. 350-9. http://www.sciencedirect.com/science/journal/07383991
Sepucha, K and Belkora, J,Putting shared decision making to work in breast and prostate cancers: tools for community oncologists.Commun Oncol, 2007.4: p. 685–689, 691. http://www.communityoncology.net/journal/articles/0411685.pdf
Belkora J, Edlow B, Aviv C, Sepucha K, Esserman L: Training community resource center and clinic personnel to prompt patients in listing questions for doctors: follow-up interviews about barriers and facilitators to the implementation of Consultation Planning. Implementation Science 2008, 3:6. http://www.implementationscience.com/content/3/1/6
Belkora J, Rugo HS, Moore DH, Hutton D, and Esserman L, Risk communication with patients with breast cancer: cautionary notes about printing Adjuvant! estimates. Lancet Oncol, 2008. 9: p. 602-3. http://www.thelancet.com/journals/lanonc/article/PIIS147020450870158X/abstract.
Belkora JK, Loth MK, Chen DF, Chen JY, Volz S, and Esserman LJ, Monitoring the Implementation of Consultation Planning, Recording, and Summarizing in a Breast Care Center. Patient Educ Couns,2008 Dec;73(3):536-43. http://www.sciencedirect.com/science/article/B6TBC-4T9TC3F-1/2/62b9f97ed06ccc24b0cba4d8f49a5bf0
Ozanne EM, Braithwaite D, Sepucha K, Moore D, Esserman L, Belkora J. Sensitivity to Input Variability of the Adjuvant! Online Breast Cancer Prognostic Model. J Clin Oncol. Jan 10 2009;27(2):214-219. http://jco.ascopubs.org/cgi/doi/10.1200/JCO.2008.17.3914
Braithwaite D, Moore D, Liebman M, Belkora J, West D, Satariano W, Tammemagi C, Ozanne E, Hiatt R, Esserman L. Hypertension is an independent predictor of survival disparity between African American and white breast cancer patients. Int J Cancer. 2009 Mar 1;124(5):1213-9. http://www3.interscience.wiley.com/journal/121431839/abstract?CRETRY=1&SRETRY=0
Belkora J, Moore DH, Hutton DW. Assessing risk communication in breast cancer: Are continuous measures of patient knowledge better than categorical? Patient Educ Couns 2009, 76(1):106-112. http://www.sciencedirect.com/science/article/B6TBC-4V8N7H8-1/2/69bcce336b74be885cfcd43b46284ad0
Belkora JK, Rugo HS, Moore DH, Hutton DW, Chen DF, Esserman LJ: Oncologist use of the Adjuvant! model for risk communication: a pilot study examining patient knowledge of 10-year prognosis. BMC Cancer 2009, 9:127. http://www.biomedcentral.com/1471-2407/9/127.
Hutton D, Belkora J, Shachter R, Moore D. Are patients getting the “gist” in risk communication: patient knowledge of breast cancer therapy prognosis. J Cancer Educ 2009, 24(3):194-199. http://www.informaworld.com/smpp/section?content=a912376147&fulltext=713240928
Belkora J, Franklin L, O’Donnell S, Ohnemus J, Stacey D. Adaptation Of Consultation Planning For Native American And Latina Women With Breast Cancer. In Press. Journal of Rural Health.
Systematic Reviews of communication support
McClement, S.E. and T.F. Hack, Audio-taping the oncology treatment consultation: a literature review. Patient Educ Couns, 1999. 36(3): p. 229-38.
Harrington, J., L.M. Noble, and S.P. Newman, Improving patients' communication with doctors: a systematic review of intervention studies. Patient Educ Couns, 2004. 52(1): p. 7-16.
Griffin, S.J., et al., Effect on health-related outcomes of interventions to alter the interaction between patients and practitioners: a systematic review of trials. Ann Fam Med, 2004. 2(6): p. 595-608.
O'Connor AM, Stacey D, Entwistle V, Llewellyn-Thomas H, Rovner D, Holmes-Rovner M, Tait V, Tetroe J, Fiset V, Barry M, Jones J. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2003:CD001431.
Scott, J.T., et al., Recordings or summaries of consultations for people with cancer. Cochrane Database Syst Rev, 2003(2) CD001539.
Murray E, et al., Interactive Health Communication Applications for people with chronic disease. Cochrane Database Syst Rev, 2005 (4): CD004274.
Kinnersley P, Edwards A, Hood K, Cadbury N, Ryan R, Prout H, Owen D, MacBeth F, Butow P, Butler C. Interventions before consultations for helping patients address their information needs. Cochrane Database of Systematic Reviews: Reviews 2007 Issue 3 John Wiley & Sons, Ltd Chichester, UK DOI:
Dimoska A, Tattersall MH, Butow PN, Shepherd H, and Kinnersley P,Can a "prompt list" empower cancer patients to ask relevant questions?Cancer, 2008. 113: p. 225-37, http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=18484592
Selected Studies of visit preparation, consultation support, or decision aiding
Roter, D.L., Patient participation in the patient-provider interaction: the effects of patient question asking on the quality of interaction, satisfaction and compliance. Health Educ Monogr, 1977. 5(4): p. 281-315.
Greenfield, S., S. Kaplan, and J. Ware, Expanding Patient Involvement in Care: Effects on Patient Outcomes. Annals of Internal Medicine, 1985. 102: p. 520-528.
Greenfield, S., Kaplan S, et al., Patient's Participation in Medical Care: Effects on Blood Sugar Control and Quality of Life in Diabetes. Journal of Internal Medicine, 1988. 3 (Sept/Oct): p. 448-457.
Butow, P.N., et al., Patient participation in the cancer consultation: evaluation of a question prompt sheet. Ann Oncol, 1994. 5(3): p. 199-204.
Brown, R., et al., Promoting patient participation in the cancer consultation: evaluation of a prompt sheet and coaching in question-asking. Br J Cancer, 1999. 80(1-2): p. 242-8.
Brown, R.F., et al., Promoting patient participation and shortening cancer consultations: a randomised trial. Br J Cancer, 2001. 85(9): p. 1273-9.
Tattersall, M.H., Consultation audio-tapes: an information aid, and a quality assurance and research tool. Support Care Cancer, 2002. 10(3): p. 217-21.
Need for information and communication
Rutten, L.J., et al., Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns, 2005. 57(3): p. 250-61. Hack, T.F., L.F. Degner, and P.A. Parker, The communication goals and needs of cancer patients: a review. Psychooncology, 2005. 14(10): p. 831-45; discussion 846-7. Fellowes D, Wilkinson S, and Moore P, Communication skills training for health care professionals working with cancer patients, their families and/or carers. Cochrane Database Syst Rev, 2004: p. CD003751 Kennedy Sheldon L, Communication in oncology care: the effectiveness of skills training workshops for healthcare providers. Clinical Journal of Oncology Nursing, 2005. 9: p. 305-12 Stewart MA, Effective physician-patient communication and health outcomes: a review. CMAJ, 1995. 152: p. 1423-33