A Proposed Taxonomy for Decision Support Tools Based on Person-Centered Shared Decision-Making

J Clin Pathways. 2022;8(5):24-28.

Although decision support tools (DSTs) are important in the process of treatment-related decision-making, widespread use has not been achieved.^1,2 Some reasons for the scarcity of use include a lack of physician and patient awareness, inapplicability of DST to the individual patient or disease, and concerns regarding physician autonomy.³ DSTs (also known as patient decision aids) take different approaches, have various formats, contain diverse content, and serve specific audiences. Moreover, many focus primarily on the clinical dimensions and expertise related to decisions and not enough on the individual patient expertise and knowledge about factors critical to getting the right care to the right patient at the right time. There is a need for a systematic and transparent process for developing and evaluating DSTs as it relates to their ability to address nonmedical concerns and impact, as well as patient preferences.

The Patient Advocate Foundation and the National Patient Advocate Foundation, with input from multiple stakeholders, have spent more than 2 years developing a set of person-centered standards for DSTs as the basis for a complimentary accreditation process that extends existing efforts, such as the International Patient Decision Aid Standards.⁴ Subsequent feature articles in this journal will describe the outcomes of this process and how they can be applied to clinical workflow.

The first step is to develop a taxonomy for differentiating between different types of DSTs based on the presence or absence of clinical content and the primary user/driver of the tool. This taxonomy is useful for the ability to selectively apply or modify both existing and proposed standards to different DSTs and for the development of a more standardized approach to decision-making processes including when and how different types of DSTs could be used when designed to specific standards of objectivity, transparency, quality, and person-centeredness. Our goal is to expand not only the scope of the information set that is commonly considered critical to shared decision-making and the tools that support it, but also when those conversations happen, how they happen, and between whom.

The need for increased personalization in health care and DSTs has never been greater.^5-7 Increasing efforts to deliver value-based rather than volume-based care, the growth of precision medicine and targeted diagnostics, the rise in patient out-of-pocket costs, and the growing demands to address social determinants and health inequities all lead to a common value proposition for health care: to get the right care to the right patient at the right time.

The health care system must find new ways to learn more about the individual patient being served, including personal needs, preferences, and goals. When patients and their caregivers use decision aids, they improve their knowledge of care selection and planning options while feeling better equipped to understand and share what matters most to them.⁸ Growing evidence suggests that decision aids can improve value-congruent choices. DSTs can play a pivotal role in standardizing the means by which appropriate customization in health care is achieved, and bringing efficiencies to the process of learning and communicating more information about the individual patient (without a commiserate increase in the amount of time spent to optimally personalize the selection of and planning for an individual’s care). For DSTs to perform these functions appropriately, greater attention must be paid to how outcomes are defined, treatment options are designed, and care is delivered in a person-centered manner.

The literature related to DSTs reflects a broad range of uses and applications.^9,10 At the most basic level, a DST helps to inform and facilitate a decision-focused conversation in health care.^11,12 DSTs can provide opportunities for patients to identify and articulate their values and preferences. Some utilize structured guidance to encourage open, honest communication about the benefits and harms for treatment options.¹³ DSTs also come in many forms (used separately or in combination), including brochures, audiovisual materials, educational sessions, interactive websites, or counseling sessions.¹⁴

The decision environments typically associated with DSTs are those that involve treatment selection as part of a process commonly referred to as shared decision-making.^15-17 It is in this context that standards and certification efforts have focused. However, the need for shared decision-making extends beyond treatment selection to include care planning activities as well as patient-reported outcomes (PROs) and other measurement selections as depicted in Figure 1. As PROs and other data are collected during a patient’s care journey, that information can be analyzed in the form of real-world evidence to further enhance the information available to similar patients making decisions related to care selection and planning. A patient may not have much, if any, choice in their treatment options, yet choices may exist as they relate to the how, when, and where patients receive the care selected.¹⁸ Standards and certification efforts should address DSTs that support numerous key decision opportunities in the care continuum.^19-21

The most robust and well-established set of standards designed for the formal certification of DSTs are the International Patient Decision Aid Standards (IPDAS). DST certification methods developed by the National Quality Forum²² and the Washington Healthcare Authority are based almost entirely on, and largely replicate, the IPDAS framework.^23,24

These efforts have focused on the critical domain of clinical decision-making in the context of treatment selection and application of DSTs to support that process in an objective manner. However, many different types of DSTs that do not delineate treatment options fall outside the scope of the existing standards and certification opportunities offered by IPDAS and related models. For the purposes of applying standards to a DST using the IPDAS methodology, a tool is only considered eligible for certification as a decision aid if it meets all six qualifications listed below, four of which require the tool to address treatment options:

• Describes the condition (health or other) related to the decision;
• Describes the decision that needs to be considered (the index decision);
• Lists the treatment options;
• Has information about the positive features of the options (eg, benefits, advantages);
• Has information about negative features of the options (eg, harms, side effects, disadvantages); or
• Helps patients clarify their values for outcomes of options by asking people to think about which positive and negative features of the options matter most to them and/or describing each option to help patients imagine the physical, social, and/or psychological effect.²⁵

However, many tools that are designed to support health care decision-making do not contain clinical information about treatment options. Some DSTs support conversations that should occur after a patient has made their treatment selection. Other tools focus almost entirely on surfacing what’s important to patients including their logistical, financial, social, and emotional needs. Under this taxonomy framework, the definition of DSTs is inclusive of a much broader range of tools that serve different functions related to supporting decisions across various aspects of care and different types of clinical and nonclinical information/expertise (Table 1).

By creating a taxonomy for classifying DSTs, we can customize and apply the IPDAS standards to DSTs beyond only those that compare and contrast treatment options and ensure the inclusion of patient-centric elements to all types as appropriate. More importantly, we can expand the scope of DSTs and associated standards to those that span the important range of decisions involved in the planning of care and measurement selection, which happens after a treatment has been selected.

The form and function of a particular DST depend on when and how it is used in the care delivery process, and perhaps most importantly by whom. Since there is no “best” option for everyone, decisions are defined as being more person-centered when they are informed by the latest scientific evidence and based on patients’ informed values associated with outcomes.²⁶ Evidence shows that clinicians are not good judges of patients’ values, and patients often have inadequate knowledge, unrealistic expectations, and decisional conflict that interfere with their involvement in decision-making.²⁷ For a DST to be person-centered depends in part on the role it intends to play in bridging the gap between the clinical information set in which the clinician has expertise and the nonclinical information that is the patient’s expertise. A single DST can focus on just one, but both must be present for true shared decision-making.²⁸

DSTs that primarily deal with the clinical aspects of care are essential, especially those that delineate treatment options and associated risks and benefits. These clinically focused DSTs can also include patient goals and preferences and/or be used in combination with those that focus on surfacing patient insights, especially those pertaining to nonclinical factors and social determinants of health.

Patients pay dearly in monetary and nonmonetary ways for their health care.^29,30 Thus, patients want and deserve to be involved in the key decisions that impact their care. The essence of person-centered care means that patients have more than just a role to play in understanding and weighing the pros and cons of treatment options. It is essential that the processes for including them are engineered early and often to create mutual respect and allow their expertise to be heard (and listened to) well before and while treatment options are discussed and decided,³¹ as well as after and throughout the treatment trajectory.

The power gap in health care is well established,³² referring to the imbalance of agency and authority between patients and health care stakeholders that can lead to suboptimal care and negatively impact a patient’s experience and/or outcomes. The gap stems from patterns of intellectual authoritarianism and paternalism in health care and the information asymmetry, such an environment perpetuates. A balanced patient-provider relationship should lead to more shared decision-making and include tools to support the practice of making treatment decisions based upon clinician expertise and patient lifestyle needs, values, and preferences (Figure 2).

Medical professionals are the experts in the science of treatment options and side effects. Many DSTs are designed to help medical professionals identify and articulate the clinical aspects of a decision, and then have a robust discussion with patients about the pros and cons of each. Few patients are experts in the science associated with their disease at the point of diagnosis or even during initial treatment selection. Some patients work exhaustively to learn as much as they can in this regard so they can better understand and participate in the clinical aspects of their care, often known as health literacy: “the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions.”^33,34

Despite obvious limitations in their clinical knowledge, patients inherently bring an expertise to the table that their clinicians lack. Patients are experts about their preferences, goals, and lived experiences.³⁵ This expertise only grows as patients endure the gauntlet of their treatment and its impact on their emotional, physical, social, and financial lives. Moreover, most clinicians have a genuine desire to learn more about their patients and provide personalized care throughout the patient’s journey; it is what makes the job rewarding on a human level.

Part of the promise of person-centered care is to bring these two sources of expertise to the decision-making table for treatment selection, care planning, and measurement activities. This process enables the delivery of co-created care that integrates the medical evidence with relevant personal attributes.³⁶ Just as the patient can engage more effectively with their clinician through increased health literacy, the clinician can engage more effectively with the patient through “patient literacy.”

Properly designed DSTs are essential to this endeavor of surfacing medical and patient information and then facilitating collaborative discussion that mixes the two before, during, and after care is selected and planned. Moreover, this process of helping the patient become more health literate and the clinician become more patient literate takes additional time and energy. DSTs can play a role in making the process more efficient and effective, but no single DST can adequately serve both the patient and clinician’s needs and expertise. It is upon this basis that the first distinction between different types of DSTs can be made; those that are meant primarily for independent use by either the patient or clinician.

A targeted, patient-facing DST is generally a self-led or navigated tool to prepare and inform patients of their decision-making activities (Supplemental Table). The content may be oriented toward helping the patient understand the clinical aspects of their care and associated options and/or may help a patient contemplate and articulate what’s important to them, including goals of care or challenges and barriers. And for many patients, these attributes will extend into the everyday necessities of life and the social determinants that breed health inequities (food, housing, transportation, work disruption, insurance coverage, etc).

For some patients, the process of shared decision-making should start from the patient’s perspective to better understand how treatment options might impact their life. According to Verberne et al, “starting from a focus on the person could help bring all relevant information to the table including the patient’s perspective and build a more equal and effective partnership between patient and healthcare professional.”²⁶ The tool may be found by the patient independently or given to the patient by a provider, disease advocacy group, or patient navigator.

A targeted, clinician-facing DST is used by a medical professional to surface and guide evidence-based treatment and care plan options (Supplemental Table). Such tools are not inherently designed for use by or to be shared with patients (although a clinician could decide to do so). They help a clinician to quickly identify a short list of appropriate therapies and medical side effects from among an increasingly vast world of medical options. As such, this type of DST contains clinical information particularly related to different treatment options and medical side effect management approaches.

Meaningful shared decision-making at any point in the care continuum requires a mutual discussion between the clinician and the patient. The goal is to create a collaborative engagement with patients toward preference-consistent decisions.³⁷ DSTs that support this process are crucial to ensuring some degree of quality, consistency, and objectivity. Thus, the next type of DSTs are collaborative in nature; they help guide, facilitate, and/or engineer a decision-oriented discussion between a clinician and a patient.

We define a collaborative DST initiated by the clinician as one that is used by the provider during clinical interaction to facilitate a decision about care selection or planning (Supplemental Table). Such tools are inherently going to contain clinical information, including treatment and nontreatment options, especially given the focus that clinicians have on the medical elements of a decision. It is equally important for specific patient preferences and goals to be front and center in these discussions. These elements are often going to extend beyond the clinical dimensions of care (ie, work disruption, transportation burden, childcare needs, or food and housing insecurity). In some cases, care and treatment options will vary in the way they impact a patient’s life.

A collaborative DST could also be designed for initiation by the patient. Such a tool is used by the patient during clinical interaction to facilitate a decision about care selection or planning (Supplemental Table). We would expect a collaborative, patient initiation to differ from a clinician initiation in its focus on patient preferences, concerns, and goals including nonmedical attributes. These tools may or may not include medical or clinical information related to treatment options or medical side effects. Some tools may take a hybrid approach by having both a clinician- and patient-facing element.

The purpose of defining different types of DSTs is not to suggest that one is better or more important to have than another. We advocate for the utilization of multiple types of DSTs over the patient’s journey through the care continuum. Just like the shared decision-making opportunities they support; the use of a DST should not be considered a single or isolated experience. A single tool may be used multiple times or multiple tools used in combination to facilitate patient-clinician conversations at key decision points.

The ultimate goal is to utilize a DST system that combines several different types of tools throughout the care selection, planning, and measurement process. Properly designed and delivered at the right moments, DSTs can help create a more standardized process for how to increase the likelihood of getting the right care to the right patient at the right time; a goal concordant care plan that captures the clinical and nonclinical aspects  of care.

Authors: Alan J. Balch, PhD; Rebekah SM Angove, PhD; and Kathleen D. Gallagher, MPH

Affiliations: Patient Advocate Foundation