Abstract

Summary: Despite its theoretical appeal, the concept of shared decision making in the clinical encounter has yet to translate into practice. In this article we revisit this approach and suggest an alternative we have labeled “collaborative decision making,” which may lead to more equitable and more favorable outcomes. We define collaborative decision making as a process of engagement in which health professionals and patients (and their loved ones) work together, often using information and communication technologies to understand clinical issues and determine the best course of action. Moving beyond the two-way knowledge exchange proposed in the shared decision making model, we outline a scenario in which the exchange of information leads to the development of a stronger partnership between the patients and the health professionals. We suggest that an organization readiness for change framework be used to explore how information and communication technology can facilitate effective patient partnerships as health care becomes increasingly complex and challenging.
Keywords: Decision making, collaboration, patient-provider relationship, e-health.
Citation: O’Grady L and Jadad A. Shifting from shared to collaborative decision making: a change in thinking and doing. J Participat Med. 2010 Nov 8; 2:e13.
Published: November 8, 2010.
Competing Interests: The authors have declared that no competing interests exist.

Introduction

“Some problems are so complex that you have to be highly intelligent and well-informed just to be undecided about them.”
–Laurence J. Peter

In 1980, Dr. F.J. Ingelfinger, a former Editor-in-Chief of the New England Journal of Medicine and renowned gastroenterologist, recounted his experience with decision making as a clinician-turned-patient in an article he entitled “Arrogance.[1]” Following a diagnosis of adenocarcinoma at the gastroesophageal junction, he described how he drew on his own expertise and relied on advice from his colleagues regarding treatment options. He experienced great difficulty weighing information from these various sources to make decisions about his care. After much deliberation, Dr. Ingelfinger concluded that another clinician should make decisions about his treatment.

Perhaps it was easier for Ingelfinger to let go of his decision making option–he already had more knowledge in this area than most people. He made an informed decision not to make decisions about his treatment. He felt sufficiently empowered to “disempower” himself, eventually pursuing a mode of decision making that removed the burden from his own shoulders.[1] In addition to this “paternalistic” mode chosen by Dr. Ingelfinger, where the clinician makes the decisions, two alternatives have been proposed. One, known as “autonomous”, refers to situations in which the patient makes the decisions, in some cases with clinicians acting as sources of information.[2] In 1980 American actor Steve McQueen reportedly made an “autonomous” decision for his treatment of mesothelioma. When he was given a grim prognosis, he sought alternative care in Mexico.[3] This mode is not commonly used throughout the world, since patients are often limited to the treatment options available to the clinicians at hand.[4] Another model is known as “shared decision making.[2]” It describes a process by which clinicians (mostly physicians, but also nurses and other allied health professions) and patients converse about various options and preferences, reaching a decision by consensus. These options all focus on who is making the decision–the patient, the clinician, or both.

Shared Decision Making

Thus far, “the concept of shared decision making has been rather poorly and loosely defined.[2]” At face value, the active role played by patients in decisions about their own health is an attractive feature of shared decision making. After all, it is difficult to argue against efforts that emphasize the need to present treatment options to patients and to take into account their preferences.[5] It seems obvious that most patients want to be informed[6] and many would like to participate in shared decision making when more than one diagnostic or therapeutic option is available, and when they have information about each option.[7] Clinicians, on the other hand, should always be expected to explore the options that patients prefer.[8] The minimum requirement for a clinician and a patient to participate in shared decision making is the opportunity to have a non-hurried conversation about the options available, and to be willing to listen and respect each other’s views, values, and preferences.

Despite its intuitive and theoretical appeal, shared decision making does not appear to have translated into everyday clinical practice.[9] Patients (including those who are also clinicians) have demonstrated that their appetite to play an active role in the decision making process decreases as the severity of illness increases.[10] In other cases, patient participation in the decision making process is either not possible (eg, only one option is available), or appropriate but with limited value (eg, choosing among any of the available options could lead to high but different risks of mortality and serious adverse events).[11]

Perhaps the most important impediment to shared decision making is the time constraint faced by health professionals in most busy clinical settings.[11] Unfortunately, not many clinical environments are conducive to informing patients in a manner that is timely, unhurried, easily understood, and jargon-free. Very few clinicians are equipped with the skills or tools necessary to encourage people to consider outcomes, ask questions, clarify values, and to express preferences about diagnostic or treatment options within normal consultation times.[12] Instead, most of the consultation time tends to be spent defining the problem rather than suggesting treatment options[13], thereby hindering the capacity for shared decision making. Moreover, patients might change their preferred decision making mode over the natural history of major diseases, [14] matching the fluctuating degrees of seriousness of their conditions.[15] Collaboration between patients and clinicians may be a more appropriate and feasible objective than shared decision making. Table 1 illustrates these decision making models.

Table 1: Clinical decision making models.

Collaborative Decision Making

The term “shared” implies something that two parties “have in common, held or experienced in common.[16]” In most cases, the nature and extent of the information available, and the values and preferences, that clinicians and patients can realistically share are limited. To “collaborate,” on the other hand, is always possible. It merely requires that the parties “work together, especially in a joint intellectual effort.[17]” Physicians have more expertise in medical issues, whereas patients have expertise about their own life issues and experiences. They may also have medical knowledge that should not be discounted. Unlike shared decision making which focuses on an event (the treatment “decision”), collaborative decision making is a process of engagement that seeks to devise an optimal plan of action. Also, unlike shared decision making, which focuses on the “medical” issue, the collaborative model focuses more broadly on the highest priority health-related problems that emerge from the confluence of medical and non-medical issues. That is to say, the resolution of these problems will move the patient closer to addressing the medical issue within the context of a much richer and complex life. Collaborative decision making, by using knowledge building principles, focuses on the “how” and not the “who” as decision models have previously done. Knowledge building, in this context could be defined as “…the social activity by which communities create new knowledge through a process of collaborative, iterative idea improvement.[18]” It is by engaging in this thorough process that decision making could start to shift to a more collaborative mode.

Discussion

How is collaborative decision making different from shared decision making?

Let us consider the case of an HIV positive patient who is reluctant to start taking medication for which there is a clear indication. In a shared decision making model, the physician informs the patient of the need to start treatment, describes the rationale, and provides information on what to expect. Together, they weigh the pros and cons of starting treatment. The patient maintains the freedom to choose not to start treatment. Both the patient and provider then agree to revisit the decision in a followup appointment.

With the collaborative decision making model, the physician informs the patient of the indication for treatment, the reasons why and what to expect, and invites the patient to elaborate on what is happening in his life, articulating non-medical factors (eg, denial about the diagnosis or negative feelings about pharmacological interventions in general). At this stage, the physician and patient together reframe the treatment decision, based on the confluence of both medical and non-medical factors. The current situation, as it is reframed is: “How can I (the patient) come to terms with my feelings about treatment?” At this stage an action plan can be agreed upon by both parties. For example, the patient would agree to seek counselling to address feelings about HIV and treatment. This broader approach allows the physician to reframe the medical issue within a wider context that will enable her to remain engaged in the patient’s overall health management process, while clearly defining her limits and responsibilities. A follow up appointment could be offered with an open date, should the patient choose to reconsider the decision. By focusing on an action plan, the physician and patient could make progress towards the common goal of improved health. This process would build the physician’s knowledge of the patient’s life experience. It would also allow the physician to clearly articulate her role in the patient’s overall health management landscape.

Although distinct, shared and collaborative decision making should not be viewed as mutually exclusive, but as complementary approaches that could contribute to the emergence of well-balanced partnerships between patients and health professionals in the clinical realm.

Collaborative Decision Making: A Real-World Example

In the mid-1990s, the use of a new class of medications known as protease inhibitors for the management of HIV resulted in an unanticipated side effect known as lipodystrophy or fat redistribution. Many of those taking these new treatments complained that the “buffalo hump” on their back or “protease paunch” on their stomach were intolerable, but were dismissed by their physicians as the issue was considered cosmetic and not clinical in nature. In some cases, patients wanted to cease treatment due to this adverse effect. Initially, physicians were not supportive of this strategy.[19] However, persistent expressions of concern by patients about these cosmetic issues motivated additional research on protease inhibitors that uncovered serious underlying metabolic disturbances with the use of these medications.[20] Because patients insisted on providing physicians details of their life issue (living with lipodystrophy) and the physicians were willing to listen, Behrens, et al., suggested using an alternative HIV medication approach, switching from protease inhibitors to non-nucleoside analogue reverse transcriptase inhibitors (NNRTI’s). Whether that will eliminate the lipodystrophy problem and body composition problem will require further study.[20]

Innovation to Facilitate Collaboration

Collaboration is a familiar and valued concept for both clinicians and patients. Providers rely on a variety of sources, including expertise of colleagues, to deal with complex cases and to acquire new skills. Providers also increasingly use the Internet to quickly obtain or confirm medical information. But the advent of the Internet has had an especially significant impact on lowering the barriers for patients to acquire information about their medical conditions. In addition, online tools have allowed patients to become increasingly engaged in collaborative ventures with both providers and other patients. Many patients are now communicating and learning from each other using online resources such as mailing lists, message boards and increasingly powerful social networking tools that enable them to have their own profiles, to co-create knowledge and to communicate with each other across traditional boundaries.[21] Patients are aware that there is much to learn from others with the same illness, many of whom have already faced similar issues.[22] As patients gain knowledge, they become more comfortable participating in the clinical decision making process.

Collaboration has played a key role during most of the history of disease management. Before the advent of curative treatments in the late 19th and early 20th century, healers had few effective interventions at their disposal. They had to rely on working with their patients to achieve the best possible outcomes.[23] For example, a physician had to rely on a patient’s narrative description of his or her symptoms, and on the knowledge of the patient as a member of their same community. However, due to the industrialization of medicine and the increased reliance on laboratory and radiological diagnostic tools, physicians reduced their reliance on the patients’ physical presence and social context, which reduced their dependence on their traditional collaborative relationship.[24] Now, in the 21st century, when chronic, incurable diseases are responsible for most of the disabilities and deaths in the world,[25] it may be an appropriate time to re-claim the power of collaboration.

Patients with complex chronic conditions (those living with two or more diseases), taking multiple medications and experiencing a wide variety of symptoms for which an explanation and treatment are often elusive, require clinicians who are willing to participate in collaborative decision making. In these cases, it is only by dealing with both medical and non-medical issues together that they can avoid or minimize unnecessary suffering and achieve optimal levels of well-being.[26]

But what mechanisms are currently available to support collaboration between patients and clinicians? What can be done to facilitate the collaboration between clinicians and patients?

In 2001, Kravitz and Melnikow[27] stated, “We need practical tools based on research that help clinicians to learn from patients and help patients learn from medical experts.” We believe this captures the essence of patient-clinician collaborative decision making. Perhaps one of the barriers until now has been a lack of an acknowledgement of how learning could and should happen collaboratively and bi-directionally. Technological developments that could facilitate this process, like electronic health records, need to be employed as enablers of a collaborative relationship between clinicians and patients.[28][29][30] The rapid emergence of online social networking applications also creates an excellent opportunity for patients and clinicians to interact and learn from each other, and to support each other.[31]

We now have nearly ubiquitous wireless networks and technological convergence between the Internet and mobile communication tools that can promote collaboration, reduce costs and eliminate traditional barriers, particularly those related to data interoperability and physical location.[32]

The use of these new collaborative tools will soon become second nature for clinicians and patients alike. But this will take time as all players become accustomed to such innovations as a part of health care reform efforts at all levels.

Conclusions

In 2002, Coulter[33] inquired, “Is shared decision making doomed to remain the obsession of a few academic pointy heads?” She may have been right.

Improved outcomes may be achieved by shifting the focus from shared decision making to a collaborative model. This requires a change in “thinking” as well as “doing” by clinicians and patients. In this form of integrated knowledge translation[34] both parties must acknowledge that learning from each other and building a common pool of knowledge will lead to a more balanced, satisfactory and ultimately appropriate form of care. However, much work needs to be done if patients are to work with clinicians on a “level playing field.” Other sectors of society, including the traditionally conservative banking and insurance industries, have changed substantially the way in which they interact with their customers. Necessity, the mother of innovation, has played a crucial role in this shift. As we face a potentially unsustainable health system, both clinicians and patients have a responsibility to help promote optimal health through the innovative use of the powerful information and communication technologies they have available to them. The rapid penetration of mobile phones and social networking tools throughout the world indicates that the public is ready for this shift. Will clinicians be willing to join in and foster the transformation of their relationship with patients?[35]

Acknowledgements

This work was supported by funding from the Canadian Institutes of Health Research (CIHR) and the Health Care, Technology, and Place Research Training Program (HCTP), Dr. L. O’Grady was supported by a CIHR Post Doctoral Fellowship sponsored by the Ontario Women’s Health Council (OWHC) and the Institute of Gender and Health (IHC). Dr. Jadad is supported by the Canada Research Chair in eHealth Innovation and the Rose Family Chair in Supportive Care, University of Toronto and University Health Network, Canada.

References

1. Ingelfinger FJ. Arrogance. N Engl J Med. Dec 25 1980;303(26):1507-1511.↩
2. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. Mar 1997;44(5):681-692.↩
3. Lerner BH. When illness goes public: celebrity patients and how we look at medicine. Baltimore: Johns Hopkins University Press;2006. ↩
4. Stevenson FA, Barry CA, Britten N, Barber N, Bradley CP. Doctor-patient communication about drugs: the evidence for shared decision making. Soc Sci Med. Mar 2000;50(6):829-840. ↩
5. Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: the competences of involving patients in healthcare choices. Br J Gen Pract. Nov 2000;50(460):892-899. ↩
6. Deber RB. Physicians in health care management: 8. The patient-physician partnership: decision making, problem solving and the desire to participate. Cmaj. Aug 15 1994;151(4):423-427. ↩
7. Guadagnoli E, Ward P. Patient participation in decision-making. Soc Sci Med. Aug 1998;47(3):329-339.↩
8. Vogel BA, Bengel J, Helmes AW. Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns. Apr 2008;71(1):79-85. ↩
9. Stevenson FA. General practitioners’ views on shared decision making: a qualitative analysis. Patient Educ Couns. Jul 2003;50(3):291-293. ↩
10. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients’ desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med. Jan-Feb 1989;4(1):23-30. ↩
11. Gravel K, Legare F, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals’ perceptions. Implement Sci. 2006;1:16. ↩
12. Woolf SH, Chan EC, Harris R, et al. Promoting informed choice: transforming health care to dispense knowledge for decision making. Ann Intern Med. Aug 16 2005;143(4):293-300. ↩
13. Loh A, Simon D, Hennig K, Hennig B, Harter M, Elwyn G. The assessment of depressive patients’ involvement in decision making in audio-taped primary care consultations. Patient Educ Couns. Nov 2006;63(3):314-318. ↩
14. Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med. Sep 1999;49(5):651-661. ↩
15. Garfield S, Smith F, Francis SA, Chalmers C. Can patients’ preferences for involvement in decision-making regarding the use of medicines be predicted? Patient Educ Couns. Jun 2007;66(3):361-367. ↩
16. Shared WordNet Search. 3.0:http://www.webcitation.org/5Y0nTYBoR. Accessed March 26, 2007. ↩
17. The American heritage dictionary of the English language. Fourth Edition: http://www.webcitation.org/5Y0nRUs4U. Accessed March 26, 2007. ↩
18. Mylopoulos M, Scardamalia M. Doctors’ perspectives on their innovations in daily practice: implications for knowledge building in health care. Med Educ. Oct 2008;42(10):975-981. ↩
19. Silversides A. Protease inhibitors raising quality-of-life issues for HIV patients. CMAJ. Mar 23 1999;160(6):894. ↩
20. Behrens GM, Stoll M, Schmidt RE. Lipodystrophy syndrome in HIV infection: what is it, what causes it and how can it be managed? Drug Saf. Jul 2000;23(1):57-76. ↩
21. Bender JL, O’Grady L, Jadad AR. Supporting cancer patients through the continuum of care: a view from the age of social networks and computer-mediated communication. Curr Oncol. Aug 2008;15 Suppl 2:s107 es142-107. ↩
22. Wilson J. Acknowledging the expertise of patients and their organisations. BMJ. Sep 18 1999;319(7212):771-774. ↩
23. Illich I. Limits to medicine : medical nemesis, the expropriation of health. [New ed. London: Boyars;1976. ↩
24. Reiser SJ. Medicine and the reign of technology. New York: Cambridge University Press; 1978. ↩
25. G, Horvarth J, Anderson C. Chronic Conditions: Making the Case for Ongoing Care. Baltimore, Maryland: Johns Hopkins University; December 2002. ↩
26. Jadad AR, Cabrere A, Lyons RF, Martos F, Smith R. When people live with multiple chronic diseases: a collaborative approach to an emerging global challenge. 2010: Granada: Andalusian School of Public Health, 2010 [available, free of charge, at www.opimec.org). ↩
27. Kravitz RL, Melnikow J. Engaging patients in medical decision making. BMJ. Sep 15 2001;323(7313):584-585. ↩
28. Walsh SH. The clinician’s perspective on electronic health records and how they can affect patient care. BMJ. May 15 2004;328(7449):1184-1187. ↩
29. Shachak A, Jadad AR. Electronic health records in the age of social networks and global telecommunications. JAMA. Feb 3 2010;303(5):452-453. ↩
30. Zhou, Y.Y., Kanter, M. H., Wang, J. J., Garrido, T., Improved quality at Kaiser Permanente through e-mail between physicians and patients. Health Aff (Millwood). 29(7): p. 1370-5. ↩
31. Deshpande A, Jadad A. Web 2.0: Could it help move the health care system in the 21st century? The journal of men’s health & gender. December 2006;2006;3(4):332-336. ↩
32. Kluth A. Nomads at last. The Economist. Vol 387;2008:3-5.↩
33. Coulter A. Whatever happened to shared decision-making? Health Expect. Sep 2002;5(3):185-186. ↩
34. Graham ID. Knowledge Translation at CIHR. http://www.cihr-irsc.gc.ca/e/33747.html. Accessed September 9th, 2010, 2010. ↩
35. Jadad AR. What will it take to bring the internet into the consulting room? we cannot remain oblivious to our patients’ expectations. J Gen Intern Med. Aug 2005;20(8):787-788. ↩

Copyright: © 2010 Laura O’Grady and Alejandro Jadad. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.