More Easily Said Than Done.

Stiggelbout AM, Pieterse AH, De Haes JC. Shared decision making: concepts, evidence, and practice.

In conclusion, SDM is the preferred approach particularly relevant for preference-sensitive decisions. It is likely to lead to better professional-patient relationships, better decisions and better outcomes. Patients, becoming increasingly assertive, prefer this approach. It has been advocated for ethical reasons for over 40 years but nevertheless, is still not widely implemented in clinical practice. 1

In 2015, Stiggelbout, Pieterse and De Haes published an overview of the then current state of Shared Decision Making (SDM).  The article begins with a nice description of the ethical and practical reasons for adopting shared decision making as the standard practice for preference-sensitive healthcare decisions. After documenting growing professional acceptance of the concept, the authors discuss why shared decision making was infrequently being used in clinical practice. They suggest that the problem could be due to varying interpretations of what shared decision making in clinical practice means, as documented in two prior papers, one by Makoul & Clayman 2 and the other by Moumjid 3.  (For a summary and discussion of the  Makoul & Clayman paper see the August 23, 2022 post)

“Despite professionals indicating that they consider it important to share decisions with patients …, SDM seems to be applied in daily practice to a limited extent only …. Several steps have to be taken before one can truly speak of SDM … and apparently people hold conflicting views on what these steps entail.”

After summarizing the elements of shared decision making defined by Makoul & Clayman, the authors note that efforts had been underway to simplify the shared decision making process to make it easier to implement, most notably the 3-talk model discussed in the August 27, 2022 post. They propose adding a fourth step to the 3-talk model by dividing the decision talk phase into two separate components: 

1. The professional informs the patient that a decision is to be made and that the patient’s opinion is important;

2. The professional explains the options and the pros and cons of each relevant option

3. The professional and patient discuss the patient’s preferences; the professional supports the patient in deliberation

4. The professional and patient discuss patient’s decisional role preference, make or defer the decision, and discuss possible follow-up.

To encourage implementation, they then present a series of conversational scripts and checklists that could be used to implement each step of their model during a clinical encounter. 

Of note, the authors suggest that the discussion of who should be the primary decision maker, i.e., the individual who selects which option to pursue, be delayed until the fourth and final step in the process, after the decision scenario has been described and discussed. This is to ensure the patient has enough information to understand why their preferences are important before deciding whether they feel comfortable making the decision. 

Stiggelbout and colleagues then review the existing information about how often each of the SDM steps is implemented in clinical practice and report that the answer for all steps was infrequently, if at all. They conclude:  “The concept is simple, but … not easily implemented” and suggest several ways to  to improve the implementation of shared decision making in clinical practice, primarily through the development of appropriate knowledge, attitudes, and skills among practitioners though the necessary knowledge, attitudes, and skills are not further specified. 

Musings

Like the original 3-talk model, this proposal assumes that a high quality decision making process can occur through a process of enhanced communication. (It is worth noting that the article is based on a talk delivered at the 2014 Annual Meeting of the European Association for Communication in Health.)

I realize that the premise underlying a communication-based SDM model is that it will be easier to implement because it is consistent with the usual way clinicians interact with patients. However, similarity to usual practice could be a weakness rather than a strength if a communication-only strategy is easy to implement but not adequate to get the job done. 

Einstein has been quoted as saying “Make things as simple as possible, but no simpler.” 4 I wonder if relying exclusively on inter-personal communication to implement shared decision making for complex healthcare decisions that depend on unbiased, well-informed, preference-based tradeoffs is trying to make things too simple to be effective. 

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The paper raises the question of whether shared decision making means the patient must always be the primary decision maker. My understanding is that the authors propose that shared decision making can occur even if the provider makes the final choice as long as the patient is actively involved in the decision making process and their priorities and preferences are factored into the decision. This appears to be another significant but unheralded modification of the originally proposed 3-talk model where the patient is the primary decision maker. 

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The paper does a good job of reviewing the existing evidence as of 2014 about how often SDM occurs in practice and the difficulties involved in collecting this information. I am always curious about which practices choose to participate in clinical decision making research. In my experience, many are not. Unfortunately,  the authors do not include information about how practice sites were chosen for the studies they review.  I suspect that the data on SDM for practices that had not been studied are likely to be worse than those that were studied.

1 Stiggelbout AM, Pieterse AH, De Haes JC. Shared decision making: concepts, evidence, and practice. Patient Educ. Couns. 2015 Oct 1;98(10):1172-9.

2 G. Makoul, M.L. Clayman, An integrative model of shared decision making in medical encounters, Patient Educ. Couns. 60 (2006) 301–312.

3 N. Moumjid, A. Gafni, A. Brémond, M.O. Carrère, Shared decision making in the medical encounter: are we all talking about the same thing, Med. Decis.Making. 27 (2007) 539–546.

4 There is evidence that Louis Zukofsky also should have some credit for this quote, see https://quoteinvestigator.com/2011/05/13/einstein-simple/.

The three talk model of shared decision making – Part 1

Another highly cited model of shared medical decision making – Shared decision making: a model for clinical practice – was first published in 2012 by Elwyn, Frosch, Thompson and colleagues. 1 In this post, I will review the details of the initially proposed model and in next one about the 2017 update. 

The authors defined shared decision making (SDM) as:

“…an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences.”

The aim of the paper was

“… to translate conceptual descriptions into a three-step model that is practical for clinicians. The purpose of this article is to advance a novel, yet pragmatic, proposal about how to do [authors’ emphasis] SDM in routine settings, in short how to integrate good communication skills with the use of patient decision support tools.”

As implied by the definition of SDM used, the proposed model is based on the view that the goal  is to promote patient self-determination about decisions regarding their health care choices:

“… achieving SDM depends on tasks that help confer agency [authors’ emphasis] where agency refers to the capacity of individuals to act independently and make their own free choice.”

The model describes a method for providing information and promoting deliberation that will result in a decision based on a patient’s informed preferences. It is presented as a series of three conversations, hence the name “three talk model”.  The authors note that this paper presents a simplified version of the proposed model to improve the clarity of the presentation. They caution readers to remember that the actual practice of clinical decision making is dynamic and should not be considered as a simple, purely stepwise process:

“We realize that this model is a simplification of a complex, dynamic process, yet its simplicity may help others accomplish and teach shared decision making. That was our goal.”

The three steps are:

1. Choice talk, where the need to make a decision because more than one reasonable option exists is conveyed to the patient. The model specifically encourages practitioners to encourage patients to participate in a decision making process and not just defer to the practitioner’s recommendation without further consideration.

2. Option talk, where the options are identified and their relative advantages and disadvantages are reviewed preferably with the use of a patient decision support tool that will “…make options visible and may save time”.

3. Decision talk, where patient preferences are elicited and used to select a preferred option or to defer a decision pending further discussion.

The model is described as having two main components: providing information and deliberation.

Providing information involves making sure patients have accurate, high quality information about the decision options. Patient decision aids are noted to be useful for this purpose. It also involves checking to see if patients have misconceptions about the options and, if so, correcting them.

Deliberation is defined as “… a process of considering information about pros and cons of their options, to assess their implications, and to consider a range of possible futures, practical as well as emotional.”

I’ve summarized the model in the figure below, which is adapted from Figure 1 in the original paper. In the original, the three “talk” phases are within the deliberation space. However, my understanding is that the goal of the provider-patient communication components of the model is to support deliberation, so I have separated the two components in this alternative figure.

Musings

On the shared decision making spectrum originally defined by Charles, Gafni, and Whelan, this model appears to envision shared decision making as an  informed patient process. 2 (See the July 22 and July 29, 2022 posts for details about this spectrum.) There is a caution in the text about not “abandoning” the patient and a mention of achieving a practitioner-patient “shared mind” but the thrust and intent of the paper is clearly patient choice rather than a shared choice. Of note, there is no mention that the ultimate choice should be acceptable, even if not considered ideal, by both practitioner and patient.

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One of the basic reasons for promoting shared decision making is that a patient may have personal concerns and considerations that need to be included in the decision making process. Therefore I was surprised to find that there is no mention of asking the patient what information is needed to adequately compare the advantages and disadvantages of the decision options in any of the talk conversations.

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The importance of deliberation in making a decision is suitably emphasized, but never described in any detail. Given the emphasis on a communication-based process, my understanding is that the model assumes that good deliberation can occur naturally, without any support,  as long as the communication is conducted in a skillful manner. I think this is a major weakness of the model as originally proposed.

It is well known that decision making, particularly about high stakes decisions involving tradeoffs between the pros and cons of multiple decision options, is a complex process that is subject to a number of cognitive biases that can result in potentially avoidable poor choices. Moreover, although the three talk model recognizes that clinical decisions are made under conditions of uncertainty both in describing the pros and cons of decision options and possible future outcomes, I see no provision in the model for effectively managing these uncertainties.

Like communication, decision making is a skill that can be improved through the use of proper techniques and training. Proven methods for improving the quality of a decision making process that can be readily adapted for clinical use are available. It will be interesting to see if any of the many articles that have cited this paper have addressed and corrected this major deficiency in the three talk model as initially proposed. (If anyone knows if this has been done, please let me know. The prospect of combing through more than 2,000 citations is daunting.)

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A final observation – the model seems to assume that practitioners are suitably well informed about the pros and cons of decision options appropriate for individual patient circumstances. Although ideal, I suspect that ten years ago many practitioners lacked ready access to quality information about the advantages and disadvantages of the options for many clinical decisions. (I wonder how many do now.) It would have been nice, therefore, to add that the development of information support systems formatted to directly support high quality decision making is an essential requirement for effectively implementing the three-talk model in clinical practice.

1 Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decision making: a model for clinical practice. Journal Of General Internal Medicine. 2012;27(10):1361–7.

2 Charles, C, A Gafni, and T Whelan. “Shared Decision-Making in the Medical Encounter: What Does It Mean? (Or It Takes at Least Two to Tango).” Social Science & Medicine 44, no. 5 (March 1997): 681–92.

Makoul & Clayman 2006: An integrative model of shared decision making in medical encounters.

An important article in the timeline of shared medical decision making was published by Makoul and Clayman (M&C) in 2006. 1 Publications about shared medical decision making proliferated around the turn of the 21st century. Unfortunately, what different authors meant by shared decision making varied. To address this situation, M&C reviewed the literature through the end of 2003 to develop a “… sound and clinically relevant model” of shared decision making in a clinical encounter.

I think anyone seeking to gain a long range perspective on the theory and practice of shared medical decision making would benefit by reading this paper. It highlights two issues that I believe have impacted shared decision making thought and practice from the beginning and continue to do so:

• lack of a uniform definition of the concept and
• failure to fully understand what shared decision making means in clinical practice.

Of the 418 articles M&C found with the term “shared decision making” in the title or abstract, only 161 (38.5%) defined the term. Among those that did, 31 separate components of shared decision making were identified. Only two components were found in more than half: patient values & preferences and decision options.

M&C also examined the articles’ citations. One-third (56 of 161) did not reference a prior shared decision making model or definition. The five most commonly cited articles (or group of articles by the same author group) are summarized in the table below. Curious about what has happened since, I’ve also added current Google Scholar citation frequencies for the five commonly cited articles as well as the M&C article. 23456

M&C concluded their literature review with a wonderfully clear, definitive, and disconcerting statement:

“Our review reveals that, overall, there is no shared definition of shared decision making.”

They then went on to propose a new “integrative” model of clinical shared decision making. They created their model by combining shared decision making elements that had been identified in prior models plus a new one: a discussion the patient’s ability to carry out the decision options.

They categorized elements as either essential or ideal. Essential elements are those that “..must be present for patients and providers to engage in the process of SDM” and can be applied to all clinical decisions. Ideal elements are those that “…may enhance the decision-making experience but are not considered necessary for SDM to take place” primarily because they are only practical in some situations rather than all. The integrative model is summarized in the following table:

Several elements M&C considered ideal rather than essential bear further scrutiny since they are inconsistent with my current understanding of shared decision making and, I suspect, that of others as well. Here are excerpts from the paper about each item followed by some of my thoughts:

– Unbiased information: “…if it is indeed possible to deliver unbiased information, it may only be appropriate if the patient does not want the physician’s opinion.” I think this means they assumed that all information shared by a health care provider reflects the provider’s opinion or interpretation. However, a provider can choose to provide information from an external validated source, assuming it exists and can be accessed for use during a clinical encounter.

– Presentation of evidence: “…because adequate evidence is available for only a limited number of clinical decisions.” The question is, however, what should be considered adequate evidence? One could argue that the best evidence available should be considered adequate.

– Define decision making roles: “Defining roles is another element considered ideal, particularly in light of Elwyn et al.’s argument that ascertaining role preference may be an implicit process.” On the other hand, why not make it explicit?

– Mutual agreement: “We recognize that mutual agreement is highlighted in each of the prominent models, but believe it is properly positioned as an ideal rather than a necessity.” However, if the patient does not agree with the decision it is hard to say it was a good decision, particularly in a preference-based situation.

FYI here is a summary of the Makoul & Clayman model and how it compares to the most cited reference articles in their review adapted from Table 3 in the paper:

Sadly, it appears that the M&C article is still behind the journal paywall and therefore not freely available.

Musings

1. I think the SDM model proposed in this article raises several additional questions worth exploring:

• Is unbiased information really unavailable for many clinical decisions? Is information ever really “unbiased”?
• Is it ever acceptable to make a decision without considering the evidence?
• Is it really acceptable to not address upfront who will make a patient care decision: the provider, the patient, or a both?
• The M&C model does not address how to deal with decision-related uncertainties. Should uncertainty management be added and considered essential or ideal?

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2. Comparison of the conclusions of this 2006 review with 2019 review by Bonhof-Roodink and colleagues discussed in the August 5, 2022 post, strongly suggests little progress was made during the intervening 13 years:

Makoul & Clayman:

“Our review reveals that, overall, there is no shared definition of shared decision making.”

Bonhof-Roodnink et al:

“For healthcare professionals who aim to share decisions with their patients, it is good to realize that there is no consensus in the field, only that certain components seem more key to SDM than others.” 7

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3. M&C mention the 1982 President’s Commission, one of the original sources of the concept of shared medical decision making. (reference 5 below) It is freely available and worth reading for anyone interested in shared medical decision making.

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After publishing the August 19, 2022 post, “Time to ponder paradigms”, I realized I neglected to include a definition of a paradigm. 

According to the Merriam-Webster dictionary, a paradigm can be: a) a clear example or archetype,  b) a complete conjugation of a word, or c) , what I meant by the term, “a philosophical and theoretical framework of a scientific school or discipline within which theories, laws, and generalizations and the experiments performed in support of them are formulated”. 8 The latter meaning is largely attributed to Thomas Kuhn’s book “The Structure of Scientific Revolutions” published in 1962. There is a terrific discussion of Kuhn’s use of the term and subsequent developments in the philosophy of science in the Wikipedia. 

References

1. Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient education and counseling. 2006 Mar 1;60(3):301-12.

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). Social science & medicine. 1997 Mar 1;44(5):681-92.

3 Coulter A. Partnerships with patients: the pros and cons of shared clinical decision-making. Journal of health services research & policy. 1997 Apr;2(2):112-21.

4 Elwyn G, Edwards A, Gwyn R, Grol R. Towards a feasible model for shared decision making: focus group study with general practice registrars. Bmj. 1999 Sep 18;319(7212):753-6.

5 President’s Commission. President’s Commission for the study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions. The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship. Washington DC. 1982. (This item can be downloaded through the Wikipedia or at: https://repository.library.georgetown.edu/bitstream/handle/10822/559354/making_health_care_decisions.pdf?sequence=1&isAllowed=y )

6 Towle A, Greenhalgh T, Gambrill J, Godolphin W. Framework for teaching and learning informed shared decision making. BMJ. 1999 Sep 18;319(7212):766-71.

7 Bomhof-Roordink H, Gärtner FR, Stiggelbout AM, Pieterse AH. Key components of shared decision making models: a systematic review. BMJ open. 2019 Dec 1;9(12):e031763.

8 “Paradigm.” Merriam-Webster.com Dictionary, Merriam-Webster, https://www.merriam-webster.com/dictionary/paradigm. Accessed 23 Aug. 2022.

MDM musings

Time to Ponder Paradigms

James Dolan

5 hr ago

In 2021, Isabelle Scholl and colleagues published the results of a sophisticated clinical trial designed to test the effectiveness of a theoretically based, robust, multifaceted intervention designed to implement shared decision making (SDM) in a large German cancer care setting. 1

The intervention contained six components: shared decision making training for members of the health care team, individual physician coaching, an intervention to activate patients, decision aids and other patient information materials, and observations of discussions at multidisciplinary team patient care meetings. The primary outcome was patient-reported shared decision making based on the 9 item Shared Decision Making Questionnaire. Several secondary outcomes were also evaluated. 

The results showed patients during the intervention period were no more likely to report shared decision making than those in the control group, effect size d=0.02, p = 0.8. The trial was also hampered by difficulties fully implementing the study design for a variety of reasons, including difficulty implementing the training programs and the onset of the COVID pandemic. (For those interested in learning more, the article is freely available on the Internet.)

The authors conclude:

We did not find a statistically significant increase in the average level of SDM as perceived by the patients by applying an empirically and theoretically grounded multi-component implementation program to foster SDM in cancer care … As prior work suggested, there ‘are many miles to go’ to fully implement SDM in routine practice. Future work should investigate other or more intensive approaches for successful department-wide implementation of SDM in routine cancer care and further assess factors influencing implementation of SDM in cancer care.

In 2018, Legare and colleagues published a Cochrane Review of interventions to increase shared decision making by healthcare professionals. 2 Their goal was “… to find out if activities to increase shared decision making by healthcare professionals are effective or not.” 

Based on their analysis of 87 studies, the authors concluded: “It is uncertain whether any interventions for increasing the use of SDM by healthcare professionals are effective because the certainty of the evidence is low or very low.” (I can’t say for certain, but I strongly suspect the situation has not changed, despite Herculean efforts by Scholl and her colleagues and numerous other skilled and devoted investigators.)

Many people interested in shared decision making may be familiar with this Cochrane review. They may not be as familiar with the insightful commentary about it written by Richard Lehman in a related blog. 3

Lehman’s main point is that relying solely on clinical trials to guide efforts to promote routine clinical shared decision making is a mistake:

In fact this Cochrane Review can be seen more as a reflection of the muddled state of research in the field than of failure to progress. The broader social movement for greater patient autonomy and open health knowledge is unstoppable … Complex culture change cannot be adequately measured by looking at simplistic interventions with inadequate outcome metrics.

Instead, he suggests adopting a systems approach:  

If we really believe that shared decision making is a human right, and not some unreachable Platonic ideal, we need to teach it in schools, embody it in shared knowledge tools for patients and clinicians, make it a skill for lifelong learning, and design our health system to promote it.

I think Lehman is correct. Good clinical studies are expensive, time consuming, and difficult to conduct. Given the slow pace of implementing shared decision making into routine practice, I think it is time to stop relying primarily on the clinical trial paradigm and start using a broad-based approach to fostering shared decision making in the complex world of healthcare.

One idea would be to concentrate on actions that can change the behavior of a system. Donella Meadows in her wonderful book “Thinking in Systems”, as well as a separate article freely available on the web, has a list of 12 “levers” that can change system behavior. 4 5 Unfortunately, several require further explanation since they are written in the language of system dynamics. (If you are interested, the Thinking in Systems book is a quick read that will help you make sense of all of 12 levers.) The top three most powerful levers in this taxonomy are: 

#3: “Goals: The purpose of the system.”

#2: “Paradigms: The mind-set out of which the system – its goals, structure, rules, delays, parameters – arises.”

#1: “Transcending Paradigms: That is to keep oneself unattached in the arena of paradigms, to stay flexible, to realize that no paradigm is ‘true’,”that every one, including the one that sweetly shapes your own worldview, is a tremendously limited understanding of an immense and amazing universe that is far beyond human comprehension.”

Lehman’s commentary reflects these three system levers. To advance the practice of shared decision making, I think it is time to ponder our paradigms and think more in terms of systems.

References

1. Scholl, I., Hahlweg, P., Lindig, A. et al. Evaluation of a program for routine implementation of shared decision-making in cancer care: results of a stepped wedge cluster randomized trial. Implementation Sci 16, 106 (2021). https://doi.org/10.1186/s13012-021-01174-4

2. Légaré F, Adekpedjou R, Stacey D, Turcotte S, Kryworuchko J, Graham ID, Lyddiatt A, Politi MC, Thomson R, Elwyn G, Donner-Banzhoff N. Interventions for increasing the use of shared decision making by healthcare professionals. Cochrane Database of Systematic Reviews 2018, Issue 7. Art. No.: CD006732. DOI: 10.1002/14651858.CD006732.pub4.

3. Evidently Cochrane. “Shared Decision Making: Essential but Hard to Measure,” August 9, 2018. https://www.evidentlycochrane.net/shared-decision-making-essential-but-hard-to-measure/.

4. “Thinking in Systems by Donella Meadows | Chelsea Green Publishing,” September 4, 2008. https://www.chelseagreen.com/product/thinking-in-systems/.

5. The Academy for Systems Change. “Leverage Points: Places to Intervene in a System.” Accessed June 28, 2021. https://donellameadows.org/archives/leverage-points-places-to-intervene-in-a-system/.

Is routine shared decision making in clinical practice a pipe dream or a realistic possibility?

“Shared decision-making is widely accepted as a core feature of good healthcare.” [1]

“All in all, the results show it is unlikely that SDM will become implemented in US cancer care without structural and policy changes that tackle the current economic barriers towards the approach.” [2]

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In the August 12, 2022 post, I summarized and reflected on the 2021 NICE Shared Decision Making Guidance and ended speculating about what it would take to make routine shared decision making a reality in busy practice settings.

The NICE Guidance briefly addresses this issue in a single sentence:

“Shared decision making may require longer visit times and thereby reduce practice income, but any loses will be offset by ensuring the right decisions are made with people.”

An article published in 2020 by Isabelle Scholl, Sara Kobrin, and Glyn Elwyn presents a different and perhaps more realistic perspective. [2] The article summarizes information gleaned from 30 semi-structured interviews conducted with a diverse sample of people involved in the care of cancer patients in the US healthcare system. The main finding is that concerns about possible loss of practice revenue and health professional income due to shared decision making is a major barrier impeding its use in cancer care. The authors conclude:

“All in all, the results show it is unlikely that SDM will become implemented in US cancer care without structural and policy changes that tackle the current economic barriers towards the approach.”

Comments and Musings

Thus, while the authors of the NICE guideline believe possible revenue losses due to implementing routine shared decision making will be offset by higher quality patient care, the respondents in the US study viewed possible revenue losses as an insurmountable barrier to implementation of routine SDM barring major structural reform of the US healthcare system.

Does this mean that shared decision making is a nice idea but will never become a routine feature of healthcare in the US? Should everyone in the US interested in helping SDM become the standard of practice move to the UK? Or do these contrasting points of view provide important information about what is needed to overcome the current barriers to SDM implementation?

It seems to me that the respondents in the US study all assumed that practicing SDM results in loss of revenue. Is this really true?  They also assumed a major restructuring of the entire health care system was needed, but what if SDM could be made practical and financially realistic with smaller, more incremental changes in the way things are currently done?

I do not think the situation is hopeless. Rather, I think the take-home messages of these two articles are that: a) we need to know more about how to make SDM feasible, financially viable, and acceptable within the constraints of any given healthcare system and b) key constraints include the prevailing culture as well as economic and structural issues. Traditional reductionist research alone will not provide the information we need to solve the puzzle of how to implement SDM. We need to think and act more broadly and creatively.

References

1. Carmona, Chris, Joseph Crutwell, Marie Burnham, and Louisa Polak. “Shared Decision-Making: Summary of NICE Guidance.” BMJ 373 (June 17, 2021): n1430. https://doi.org/10.1136/bmj.n1430.

2. Scholl, Isabelle, Sarah Kobrin, and Glyn Elwyn. “All about the Money?’ A Qualitative Interview Study Examining Organizational- and System-Level Characteristics That Promote or Hinder Shared Decision-Making in Cancer Care in the United States.” Implementation Science 15, no. 1 (September 21, 2020): 81. https://doi.org/10.1186/s13012-020-01042-7.

NICE Shared Decision Making Guidance, June 2021

Questions this post addresses: What can be done to implement shared decision making in routine clinical practice?

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Shared decision making, particularly about consequential decisions that involve preference-based tradeoffs, is widely considered a key component of good health care. It is also widely recognized that shared decision making is not carried out nearly as often as it should be.

To improve this situation in the UK, in 2021 the National Institute for Health and Care Excellence (NICE) issued a Guidance containing recommendations to foster shared decision making. Like all NICE recommendations, the Guidance is based on published evidence supplemented with the opinions of the guideline committee members when limited trial data are available.

The Guidance defined shared decision making as  “a collaborative  process that involves a person and their healthcare  professional working together to reach a joint  decision about care.

The Guidance includes the following recommendations:

A. Top level organizational support and training for both patients and staff is essential to successfully implement shared decision making:

The Guideline Committee was aware that implementing shared decision-making is a complex task that needs to be led from the  highest levels of the organisation, supporting practitioners to  facilitate shared decision-making in every clinical encounter.

B. The Guidance recommends steps to implement shared decision making before, during, and after a consultation. Prior to the visit, patients should be alerted that there will be an important  decision discussed, given relevant information, and encouraged to bring a friend or relative with them to their appointment. After the visit, patients should be given a summary of the discussion and the decision(s) that were made, links to high quality sources of information, and the name of whom they should contact if they have additional questions.

During the visit, providers are encouraged to establish a collaborative atmosphere and:

• Discuss risks, benefits, and consequences in the context of each person’s life and what matters to them.

• Personalise information on risks, benefits, and consequences as much as possible.

• Make it clear to people how the information they are providing applies to that person personally and how much uncertainty is associated with it.

• Have a good understanding of the information and how to apply and explain it clearly.

C. To help practitioners accomplish these tasks, the Guidance includes updated guidelines for communicating information about risks and benefits. They include providing quantitative data whenever possible rather than using qualitative descriptors such as “rare” or “uncommon”, and presenting it using a mixture of pictures and numbers. The data should focus on absolute as opposed to relative risks, and be framed in both positive and negative frames using a constant denominator.

D. The use of patient decision aids is endorsed but only if they are relevant to both the decision being made and the clinical context, up to date, and reflect “evidence-based best practice”.

The full Guidance document is freely available on the Internet at: https://www.nice.org.uk/guidance/ng197. The information above is based on  short summary of the Guidance recommendations published by Carmona and colleagues. 1 Unfortunately it appears to be behind the journal paywall.

Comments and Musings

This Guidance clearly recognizes that high level organizational support is essential for clinical implementation of shared decision making. A key question then is what would make shared decision making an important enough aim for an organization to be worth the costs of implementing it. My impression is that little attention has paid to the organizational benefits of routine shared decision making. Wouldn’t it be terrific if someone could demonstrate that the benefits of routine shared decision making more than outweigh the costs involved?

I think it is unfortunate that although the Guidance conceives shared decision making as a collaborative decision making process involving both patient and practitioner, there is no mention of how the provider should engage in the decision making process other than providing  information and assessing the patient’s decision-related preferences.

While endorsing the idea of patient decision aids, the Guidance does so with a number of caveats. Particularly important to me are the cautions that decision aids should  be relevant not only to the decision being made but also the individual patient and clinical circumstances. I wonder how many decision aids currently available would meet these criteria.

Finally, the Guidance does not refer to any particular shared decision making model, though it seems quite consistent with the one proposed by Charles and colleagues. Does the model adopted affect the likelihood of implementation? My guess is that it probably does. Whether it should or not is an interesting question.

1. Carmona C, Crutwell J, Burnham M, Polak L. Shared decision-making: summary of NICE guidance BMJ 2021; 373 :n1430 doi:10.1136/bmj.n1430.

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