Skip to main content


Log in

What are the Essential Elements to Enable Patient Participation in Medical Decision Making?

  • Original Article
  • Published:
Journal of General Internal Medicine Aims and scope Submit manuscript



Patient participation in shared decision making (SDM) results in increased patient knowledge, adherence, and improved outcomes. Despite the benefits of the SDM model, many patients do not attain the level of participation they desire.


To gain a more complete understanding of the essential elements, or the prerequisites, critical to active patient participation in medical decision making from the patient’s perspective.


Qualitative study.


Individual, in-depth patient interviews were conducted until thematic saturation was reached. Two analysts independently read the transcripts and jointly developed a list of codes.


Twenty-six consecutive subjects drawn from community dwelling subjects undergoing bone density measurements.


Respondents’ experiences and beliefs related to patient participation in SDM.


Five elements were repeatedly described by respondents as being essential to enable patient participation in medical decision making: (1) patient knowledge, (2) explicit encouragement of patient participation by physicians, (3) appreciation of the patient’s responsibility/rights to play an active role in decision making, (4) awareness of choice, and (5) time.


The generalizability of the results is limited by the homogeneity of the study sample.


Our findings have important clinical implications and suggest that several needs must be met before patients can become active participants in decisions related to their health care. These needs include ensuring that patients (1) appreciate that there is uncertainty in medicine and “buy in” to the importance of active patient participation in decisions related to their health care, (2) understand the trade-offs related to available options, and (3) have the opportunity to discuss these options with their physician to arrive at a decision concordant with their values.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others


  1. Whitney SN, McGuire AL, McCullough LB. A typology of shared decision making, informed consent, and simple consent. Ann Intern Med. 2003;140:54–9.

    Google Scholar 

  2. Kassirer JP. Incorporating patients’ preferences into medical decisions. N Engl J Med. 1994;330:1895–6.

    Article  PubMed  CAS  Google Scholar 

  3. Greenfield S, Kaplan S, Ware JE, Jr. Expanding patient involvement in care. Effects on patient outcomes. Ann Intern Med. 1985;102:520–8.

    PubMed  CAS  Google Scholar 

  4. Kennedy AD, Sculpher MJ, Coulter A, et al. Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: a randomized controlled trial. JAMA. 2002;288:2701–8.

    Article  PubMed  Google Scholar 

  5. Macfarlane J, Holmes W, Gard P, Thornhill D, Macfarlane R, Hubbard R. Reducing antibiotic use for acute bronchitis in primary care: blinded, randomised controlled trial of patient information leaflet. BMJ. 2002;324:91–4.

    Article  PubMed  Google Scholar 

  6. van Dam HA, van der Horst F, van den Borne B, Ryckman R, Crebolder H. Provider–patient interaction in diabetes care: effects on patients self-care and outcomes. Patient Educ Couns. 2003;51:17–28.

    Article  PubMed  Google Scholar 

  7. Ward MM, Sundaramurthy S, Lotstein D, Bush TM, Neuwelt CM, Street RJ. Participatory patient–physician communication and morbidity in patients with systemic lupus erythematosus. Arthritis Rheum. 2003;49:810–18.

    Article  PubMed  Google Scholar 

  8. Street RL, Voigt B. Patient participation in deciding breast cancer treatment and subsequent quality of life. Med Decis Making. 1997;17:298–306.

    Article  PubMed  Google Scholar 

  9. Souchek J, Stacks JR, Brody B, et al. A trial for comparing methods for eliciting treatment preferences from men with advanced prostate cancer: results from the initial visit. Med Care. 2000;38:1040–50.

    Article  PubMed  CAS  Google Scholar 

  10. Gattellari M, Butow PN, Tattersall MH. Sharing decisions in cancer care. Soc Sci Med. 2001;52:1865–78.

    Article  PubMed  CAS  Google Scholar 

  11. Bilodeau BA, Degner LF. Information needs, sources of information, and decisional roles in women with breast cancer. Oncol Nurs Forum. 1996;23:691–6.

    PubMed  CAS  Google Scholar 

  12. Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional preferences in women with breast cancer. JAMA. 1997;277:1485–92.

    Article  PubMed  CAS  Google Scholar 

  13. Keating NL, Guadagnoli E, Landrum MB, Borbas C, Weeks JC. Treatment decision making in early-stage breast cancer: should surgeons match patients’ desired level of involvement. J Clin Oncol. 2002;20:1473–9.

    Article  PubMed  Google Scholar 

  14. Sutherland HJ, Llewellyn-Thomas HA, Lockwood GA, Tritchler DL, Till JE. Cancer patients: their desire for information and participation in treatment decisions. J R Soc Med. 1989;82:260–3.

    PubMed  CAS  Google Scholar 

  15. Caress AL. Patient roles in decision-making. Nurs Times. 1997;93:45–8.

    PubMed  CAS  Google Scholar 

  16. Levinson W, Kao A, Kuby A, Thisted RA. Not all patients want to participate in decision-making. J Gen Intern Med. 2005;20:531–5.

    Article  PubMed  Google Scholar 

  17. Say RE, Thomson R. The importance of patient preferences in treatment decisions-challenges for doctors. BMJ. 2003;327:542–5.

    Article  PubMed  Google Scholar 

  18. Street RL, Gordon HS, Ward MM, Krupat E, Kravitz RL. Patient participation in medical consultations: why some patients are more involved than others. Med Care. 2005;43:960–9.

    Article  PubMed  Google Scholar 

  19. Fraenkel L, Gulanski B, Wittink DR. Patient treatment preferences for osteoporosis. Arthritis Rheum. 2006;55(5):729–35.

    Article  PubMed  Google Scholar 

  20. Krueger RA. Focus Groups: A Practical Guide for Applied Research. Thousand Oaks, CA: Sage Publications; 1994.

    Google Scholar 

  21. Glaser B, Strauss A. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine Publishing Company; 1967.

    Google Scholar 

  22. Miles M, Huberman AM. Qualitative Data Analysis: An Expanded Sourcebook. Thousand Oaks, CA: Sage Publications; 1994.

    Google Scholar 

  23. Weitzman EA. Software and qualitative research. In: Denzin N, Lincoln Y, eds. Handbook of Qualitative Research. Thousand Oaks, CA: Sage Publications; 1999.

    Google Scholar 

  24. Kraetschmer N, Sharpe N, Urowitz S, Deber RB. How does trust affect patient preferences for participation in decision-making? Health Expect. 2004;7:317–26.

    Article  PubMed  Google Scholar 

  25. McNutt RA. Shared medical decision making: problems, process, progress. JAMA. 2004;292:2516–18.

    Article  PubMed  CAS  Google Scholar 

  26. O’Connor AM, Stacey D, Entwistle V, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2003:CD001431.

Download references


Dr. Fraenkel had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis. We would like to thank all the participants for their time and effort. The authors do not have any financial interests that would be considered a conflict of interest. This study was partially funded by the Arthritis Foundation Clinical Science Grant. Dr. Fraenkel is also supported by the K23 Award AR048826-01 A1.

Conflict of Interest

None disclosed.

Author information

Authors and Affiliations


Corresponding author

Correspondence to Liana Fraenkel MD, MPH.



Discussion Guide

Attitudes Towards Shared Decision-making Study

The purpose of this study is to understand communication between patients and their doctors around treatment decisions. We are interested in understanding how patients and their doctors make decisions about treatment for an illness or a medical condition. The information gathered through this study will be used to develop strategies to help patient and doctors communicate more effectively.

I will be asking you 14 questions. They are all open-ended questions and there are no right or wrong answers. The first 6 questions are about your own experiences in making decisions about medical care. They are not necessarily specific to osteoporosis.

  1. 1.

    To begin, I am going to ask you to think back to a time when an important decision had to be made about your treatment for an illness or a medical condition. [NOTE: Do not include small decisions, such as having a blood test.]


    Please tell me about that situation.

    • Tell me very briefly about the illness or condition.

    • Also, just briefly, how did you find out about this illness or condition?

    • What was the decision that had to be made about treating this condition?

    • How was the decision made?

    • What was your role in the decision-making process?

    • What were you told to do?

    • What did do about it?

    • Who did you talk to about this decision?

    • Why did you choose to do this?

    • Who helped you to make this decision?

    • What information did you gather about making this decision?

    • How did you get this information?

    • Are there other things you have considered doing?

  2. 2.

    Thinking back about this decision and other decisions related to your health care, to what extent do you feel that you have shared in the decision making with your doctor(s)? Why? PROBE: To what extent do you feel you have had a role in, or participated in the decision making?

  3. 3.

    Thinking back over times when you faced a decision about medical care, was there ever a time when you wished you had a bigger role in the decision-making process? PROBE: Why did you wish you had a larger role?

  4. 4.

    Now, thinking back about times when you faced a decision about medical care, was there ever an instance when you wished you were asked to make fewer decisions or have less of a role in the decision-making process? PROBE: Why?

  5. 5.

    Have you ever disagreed with your doctor about a treatment plan that was suggested to you? PROBE: How did you handle this disagreement?

  6. 6.

    Have you ever been told by a doctor to try a treatment option that was impractical for you? How did you respond to this? PROBE: Has a doctor ever disagreed with you about something you wanted to try?

The next 4 questions are about the value or importance you place on elements of the decision-making process.

  1. 7.

    In a situation where there are choices about treatment, how important is the physician’s recommendation to you in making a decision?

  2. 8.

    How important is it for the patient and doctor to share a similar outlook, such as values about health or use of medicine? Why? PROBE: Think about a situation where there are 2 medicines approved for an illness, medicine A and medicine B. What would you do if you wanted to take medicine A but the doctor recommended medicine B?

  3. 9.

    How important do you think it is for your doctor to have a clear understanding of what issues are most important to you when deciding which treatment to take?

  4. 10.

    How important is it that a physician explains clearly the financial costs of a course of treatment? Why?

The next set of questions covers your beliefs and attitudes about patient involvement in treatment decisions.

  1. 11.

    I will begin this set by asking you to talk about the pros and cons of having a patient participate in the decision-making process. What are your thoughts about having a patient be part of the decision? Why? PROBE: What is the best way to make a decision about how to treat an illness or a medical condition? Why? PROBE: What are the pros and cons of each approach? Why?

  2. 12.

    Every treatment has a chance of helping, as well as a chance of causing side effects. Who should decide whether the treatment is worth the risk? PROBE: Who should decide what side effects the patient should put up with?

  3. 13.

    In general, do you think there any barriers in our health care system which make it difficult for patients to participate in their health care? Why?

  4. 14.

    What do you think could be done to improve the decision-making process for you?

Rights and permissions

Reprints and permissions

About this article

Cite this article

Fraenkel, L., McGraw, S. What are the Essential Elements to Enable Patient Participation in Medical Decision Making?. J GEN INTERN MED 22, 614–619 (2007).

Download citation

  • Published:

  • Issue Date:

  • DOI: