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The use of PROMs and shared decision‐making in medical encounters with patients: An opportunity to deliver value‐based health care to patients

Abstract Background The recent emphasis on value‐based health care (VBHC) is thought to provide new opportunities for shared decision‐making (SDM) in the Netherlands, especially when using patient‐reported outcome measures (PROMs) in routine medical encounters. It is still largely unclear about how PROMs could be linked to SDM and what we expect from clinicians in this respect. Aim To describe approaches and lessons learned in the fields of SDM and VBHC implementation that converge in using PROMs in medical encounters. Approach Based on input from three Dutch forerunner case examples and available evidence about SDM and VBHC, we describe barriers and facilitators regarding the use of PROMs and SDM in the medical encounter. Barriers and facilitators were structured according to a conversational model that included monitoring and managing, team talk, option talk, choice talk, and decision talk. Key lessons learned and recommendations were synthesized. Results The use of individual, N = 1 PROMs scores in the medical encounter has been largely achieved in the forerunner projects. Conversation on monitoring and managing is relatively well implemented, and option talk to some extent, unlike team talk, and decision talk. Aggregated PROMs information describing outcomes of treatment options seemed to be scarcely used. Experienced barriers largely corresponded to what is known from the literature, eg, perceived lack of time and lack of tools summarizing the options. Some concerns were identified about increasing health care consumption as a result of using PROMs and SDM in the medical encounter. Conclusion Successful implementation of SDM within VBHC initiatives may not be self‐evident, even though individual, N = 1 PROMs scores are being used in the medical encounter. Education and staff resources on meso and macro levels may facilitate the more time‐consuming SDM aspects. It seems fruitful to especially target team talk and choice talk in redesigning clinical pathways.


| INTRODUCTION
Shared decision-making (SDM) has become the preferred conversation model between clinicians and patients in health care, explicitly involving patients in decision-making about diagnostic and treatment options. [1][2][3][4][5] In SDM, patients and clinicians work together to select tests and treatments, using the best available evidence with incorporation of patients' values and preferences. 3,6 This requires cooperation and activation of both clinicians and patients. Despite being so heavily embraced by scientific scholars and policymakers, formal implementation of SDM in practice has proven to be challenging. 3,[7][8][9][10] One key barrier seems to be the perceived time needed to practice SDM, [11][12][13] addressing both risk communication and clarification of patients' values. 12,14,15 Although clinicians generally support SDM, they are also often hesitant to practice it and often revert to a more authoritarian conversational model. 10,[16][17][18] In the Netherlands, the recent emphasis on value-based health care (VBHC) in health policy is thought to provide new opportunities for SDM, especially by using information based on patient-reported outcome measures (PROMs) in routine medical encounters. VBHC is a health care delivery model organized around patients' needs, 19 aimed at improving outcomes that matter to patients/populations while optimizing resource utilization. [20][21][22] PROMs are standardized questionnaires for patients to measure how they experience their health or quality of life, such as the SF-36 and EQ-5D. 23,24 In mental health care, this same type of questionnaires is used in a process called ROM (routine outcome monitoring), typically throughout the treatment process to monitor patients' condition in line with the symptoms being treated. 25,26 Three types of value have been distinguished in VBHC could provide an additional route to promote SDM implementation, 27,28 especially when and where teams of professionals redesign health care pathways bottom-up. 29 Convincing evidence [30][31][32][33][34][35][36] shows that SDM delivers triple value as outlined above and thus fits the imperative of VBHC. SDM is known to increase patients' awareness and understanding of available options and the quality of decision-making, 30,31 which help to positively impact patient outcomes and health care resource utilization. [32][33][34][35][36] In the Netherlands, formal institutions such as the Dutch Healthcare Institute and Netherlands Federation of University Medical Centres (NFU) mention SDM as a key element of VBHC and outcomes-oriented health care. 8,37,38 There is, however, little clarity about how PROMs can be linked to SDM in the medical encounter and what we should expect from clinicians in this respect. Individual, N = 1, PROMs scores could be used to prepare patients and clinicians for patient activation in general, as well as for value clarification in particular. 3,39 Aggregated PROMs scores could be used to inform patients more completely about benefits and harms of options. All in all, for treatment choices being made, it is important to have insight not only into clinical outcomes derived from clinical registries (eg, survival rates) but also into quality of life as reported by patients. 40 In theory, use of PROMs in the medical encounter could thus contribute to the delivery of value. 32,41 Figure 1 presents a conceptual model integrating these suggested elements. Figure 2 shows examples of individual, N = 1, and aggregated PROMs scores.
However, the use of PROMs and SDM both regularly meet with hesitance and scepticism from clinicians. 7,29,40,42 Furthermore, VBHC primarily focuses on optimizing outcomes, while SDM mainly addresses the process of patient-clinician interaction (although the link with outcomes is increasingly made 43 ). It therefore seems worthwhile to synthesize lessons learned so far in this emerging arena. This paper aims to describe approaches and lessons learned in the fields of SDM and VBHC implementation that converge in using PROMs in medical encounters. We did this by (a) summarizing available evidence about SDM and VBHC (including barriers and facilitators); (b) descriptive evidence collected from leading representatives at three forerunner projects (multiple sclerosis [MS] outpatient clinic; lung cancer care unit; outpatient specialist mental health care); and (c) synthesis on key lessons learned and recommendations to successfully implement PROMs and SDM in the medical encounter at the micro, meso, and macro levels.

| SDM IMPLEMENTATION
SDM is usually implemented using two approaches, namely, training of professionals and development and dissemination of decision aids or option grids. 3,29 In SDM training, typically, a conversational model is offered to professionals, breaking down the conversation into different steps. This paper used the four steps as described by Stiggelbout et al., 3 in turn influenced by the work of Elwyn and colleagues 44,45 : team talk (indicating that the patient has a choice and offering assistance in this choice as a professional); option talk (communicating about treatment options and their risks and benefits); choice talk (inviting the patient to express his or her preferences and underlying values and weighing options against those preferences [note that this is sometimes also labelled as "preference talk"]); and decision talk (involving [the preferences of] the patient in the eventual shared treatment decision). In several SDM models, it is also emphasized that patients' understanding of their condition and its management should be gauged in a first step. 46,47 We have therefore included this as well, called "management and monitoring." Many hurdles for SDM implementation have been described. 11,29,48 Legaré and Witteman 48 concluded that the three most common barriers among clinicians are "perceived time constraints, perceptions that SDM cannot be applied because of patients' characteristics, and the nature of the clinical situation." It has been demonstrated that clinicians themselves think they are already involving patients in decisions, 49 while observations in practice suggest they do not. 9 There is no robust evidence that SDM costs more time than usual care. 30,31,48 Studies consistently show that patients themselves opt for the SDM model. [50][51][52][53] However, less is clear about how SDM relates to the nature of the clinical situation. 5,8,29 Besides organizational-and system-level barriers, such as lack of fit to existing workflows of professionals 7,11 and lack of clinical guidelines emphasizing equipoise of options, 29 there may be barriers related to each phase of the conversational model, hindering SDM at the micro level of the medical encounter.
As said, one of the most apparent barriers for professionals is the experienced lack of time. While it has been argued that "this is the most frequently cited barrier for any change in clinical practice", 48 it is not refuted that time during the medical encounter with patients is usually limited. 13 It may be expected that clinicians allocate their sparse time to option talk instead of team or choice talk, 15,45 because information provision about the chosen option is legally required in light of informed consent procedures. 54 15 However, if patient values remain unexplored and no assistance is provided in preference construction, patients will likely more often agree to treatment they do not actually prefer, leading to silent misdiagnoses and overtreatment. 2

| VBHC IMPLEMENTATION
VBHC implementation can occur top-down (ie, based on external incentives) and bottom-up (ie, based on motivations of professionals/teams/ departments). In practice, often mixtures are observed. Figure 3 describes common components of VBHC implementation.

| Defining and measuring outcomes that matter to patients
One important step is usually to define and measure outcomes that matter to patients, 27,58,59 which make outcomes, prioritized and experienced by patients transparent. These are used to ensure patients' needs are met and, in turn, to improve health care delivery. 60 It has been argued that outcomes reflecting patients "priorities were traditionally infrequently measured in clinical practice, compared to

| Organization of care around the patient or patient group
Organization of care around the patient or patient group is used to bring together the full range of providers and professionals around the patient and his/her needs. 68 Patient journeys (ie, maps of the journey from the patient's perspective) are often being made transparent, to identify problems experienced by patients and improve delivery of services accordingly. 69 Another key element is that each professional involved should add optimal value by performing those tasks best suiting his/her expertise at the optimal moment. Therefore, interdisciplinary coordination of care combined with effective communication is essential, especially in shifts and referral situations. [70][71][72] Increasingly, patients are empowered to monitor and treat their own disease, implying that they need to be included in care coordination and communication. When patient information is translated from hospital settings to primary or community care, an essential question is how to optimally share this information to guarantee high value, while also optimally using patients' active involvement.

| Use of PROMS in medical encounters with patients
Currently, the main rationale for collecting PROMs is to enable evaluation and comparison at an aggregate level. Yet it is increasingly recognized that PROMS should also be discussed with patients in routine medical encounters. 42 There is not much experience yet on the merits of using PROMs in medical encounters, but the mere collection of PROMs is known to increase awareness of patients' concerns 80,81 and to enhance patient-provider communication. 25,81 Use of PROMs in medical encounters is a task that most clinicians are unfamiliar with, 42,82 and clinicians may perceive that it will take time. 42,74 It may also be problematic that not all systems allow clinicians to actively monitor and discuss symptoms or to refer patients to other facilities, ie, in stepped care models. 83,84 There may also be concerns about overconsumption, as a result of more active monitoring, although there is evidence that activating patients is generally associated with lower costs, rather than higher costs. 41

| Evaluation and comparison
The ultimate aim of PROMs collection is to learn from outcomes at the level of the individual patient and patient groups to improve value of health care delivery. 25,60,85 These data can help professionals, teams, or departments to evaluate whether their care met the needs of their patients and to compare performance to other groups within and outside their institution. 86 When teams start to work in a different way, they can monitor the patients' experiences over time.

| FORERUNNER CASE EXAMPLES FROM THE NETHERLANDS
Amsterdam UMC at the VUmc campus in the Netherlands has made commitment to VBHC, including the triple value framework, as a model for health care delivery. The rationale was to manage health care based on outcomes that matter to patients most and, by doing so, to deliver better patient and population outcomes while optimizing resource utilization. This meant a shift from focusing just on the technical value of interventions to also including personal and allocative value to ensure that care being delivered met the needs of the patients and populations the Amsterdam UMC is accountable to. Different pilot projects have been conducted, eg, at the multiple sclerosis (MS) clinic, the gender clinic, the nephrology department, and the lung cancer care unit. Within each pilot, the standard approach was to establish a multi-stakeholder group, including patients, to design the VBHC concept including a core outcomes set, care standard, and patient journey; develop the VBHC pathway, including collection of PROMs and clinical outcomes, ICT infrastructure with PROMs dashboards; training professionals in SDM and team collaboration; implement outcomes measurement and try to learn and improve based on insights garnered; and create better insight into costs. For this paper, input from the MS clinic and lung cancer care unit was collected.
In Dutch mental health care, routine outcome monitoring (ROM) was broadly implemented in a SDM context for patients with psychiatric disorders such as depression, anxiety, bipolar, psychotic, and personality disorders. The standard approach was to implement ROM tailored to the patient group in routine clinical practice; develop a conversation model in SDM using ROM as a personalized source of information (Table 1 39 ); and support clinicians with training and booster sessions to apply the SDM model using ROM as a source of information. Table 2

| Monitoring and management
In all three case examples, the standard approach is to start the med-  it was acknowledged that professionals may naturally focus on clinical and physical aspects/complaints, an important question is how to guarantee that PROMs information is actually being addressed.

| Option talk
Apparent from the projects was that clinicians feel a need to share existing options with patients, both concerning health care providers/facilities (eg, MS and LC) and management and treatment options (eg, MS, LC, mental health care). Individual, N = 1, PROMs scores are thought to give direction for the options to be discussed.
For example, if lung cancer patients have a bad condition and many complaints, the need to discuss the nontreatment option seems harder for clinicians. In the MS clinic, treatment and provider options are now more routinely discussed by the interdisciplinary team before consultations. Although option talk does seem to take place, the three projects also described lack of overview of all existing options for the specific patient groups, for example, regarding transmural care, rehabilitation, and primary care. This corresponds to previous findings in the Dutch context 29 that clinicians perceive a lack of adequate (patient) information on available options.
Despite options being discussed with patients, less emphasis is placed on informing patients about the exact risks and benefits of those options. This seems to be largely due to a perceived lack of time, a lack of decision aids, or insufficient awareness of those tools that could help in risk communication. Alternatively, it may be that clinicians do know about available decision aids, but think they are not suitable for informing their individual patients, due to a lack of personalized estimates. 5,87,88 In this respect, aggregated PROMs information on the level of treatment options is not routinely available and/or used in the three projects. Facilitators for option talk are training in SDM, training in team collaboration (contributing to better knowledge/overview of options), and availability of clinical guidelines or quality standards describing all treatment options and the importance of SDM.   PROMS will be measured digitally every three 3 months as part of a clinical study in all stages of lung cancer. In this study, patients will also monitor 12 common alarming symptoms (e.g., fever, coughing up blood) on a weekly basis. If feasible, this will be extended to all patients with LC. In addition, a dashboard will be constructed with information on all outcome parameters that can be used for internal improvement of care, but also for discussion with patients in routine medical encounters.

| Choice talk
Approach: Outcome parameters measured by ROM instruments and frequency of measuring was tailored to the patient group and determined by multidisciplinary teams of clinicians and patient representatives Outcome parameters are: symptoms (i.e., depression, anxiety, psychotic complaints, and personality traits), quality of life, social, and personal recovery (participation in society and live the life patients choose). The frequency of measuring: -In short -term treatment: during intake, treatment (at least every three 3 months) and at the end of treatment; -In long -term treatment: during intake, treatment (at least once a year) and at the end of treatment. ROM is planned before treatment evaluation. Patients fill out the ROMquestionnaires digitally at home or at the mental health care organization. Clinicians are provided with a SDM-ROM conversation model (see Table 1).  For advanced stages of LC, there is no equipoise from a medical perspective (since treatment is associated with longer survival than no-treatment). However, the option of no treatment is routinely mentioned and especially patients with a relatively bad condition are offered assistance in making a decision.
Approach: Clinicians invite patients to share their expectations about a shared process and the role they would fulfill. ROM outcomes are referred to as one of the information sources (see Step 1 in Table 1).
Barriers: Lack of time. Barriers: Stage I non-small cell LC: Dependence of the pulmonologist to recognize equipoise of options and to also address this issue in multidisciplinary meeting.
Barriers: Insufficient awareness among clinicians of the importance of team talk (step 1 in Table 1).
(Continues) Lack of training of professionals in SDM.
Facilitators: The basic concept of a routine encounter with the complete team with different specialties including the patient/ care giver. Advanced visualization of the bars and graphs of the PROMs scores (N = 1).
Facilitators: Advanced visualization of the PROMS scores in dashboards, which will give input about patients' complaints and concerns. As such, this information could shift the discussion from a focus on survival to a focus on quality of life, and thus on SDM.
Facilitators: Team training, booster sessions in the conversation model SDM using ROM.
Blind spots: The facility to work with a whole team of caregivers instead of one individual may be more expensive than thought.
It may be that using PROMs and SDM may lead to additional diagnostics and therapies being chosen.
It may be that most professionals tend to focus on the management of the discussed symptoms, and less so on the discussion about patient participation in the decisions to be made. Approach: Based on the individual, N = 1, PROMs scores combined with additional discussion during interdisciplinary outpatient clinic evaluation, the different treatment/management options are discussed with the team and patient/care giver. The nontreatment option is also routinely discussed. There is currently a lack of formal decision aids or option grids, but when these will become available (with the release of the new clinical guideline), the idea is that they will be adopted in this stage of option talk.   It is expected that the individual, N = 1, PROMs scores will prepare patients for choice talk.
Facilitators: Training and booster sessions in SDM for professionals.
The availability of individual, N = 1, ROM results, visualized in graphics, for patients, that could prepare them for choice talk.
Blind spots: SDM training often tends to focus on option talk and less so on choice talk. It seems easy to ask patients for their preferences but real assistance in preference construction is lacking.
Blind spots: It seems easy to ask patients for their preferences but real assistance in preference construction is lacking. It may be that patients' preferences are heavily influenced by their doctors' advice.
Blind spots: The individual, N = 1, ROM results can be more actively used as a source of information to prepare for choice talk (see step 2 in Table 1).
Lack of decision aids and if a decision aid is available for a specific psychiatric disorder, value clarification is often not yet embedded.

SDM step 4: Decision talk (Involving the (preferences of) the patient in the treatment decision)
Approach: At the end of the annual check-up, the team including the patient/care giver decide together which additional diagnostics and/ or therapeutic options will be chosen Approach: For stage I non-small cell LC, the pulmonologist, together with the patient, decides about treatment after the patient has used the decision aid and indicated his/her treatment preference and underlying reasons.
For advanced stages of LC, the pulmonologist typically gives a treatment recommendation (treatment/no treatment), after being informed about the context and treatment goals of the patient. For advances stages of LC: lack of positive attitude towards SDM among medical professionals, due to a lack of experienced equipoise.
All barriers described in the previous steps.
Barriers: Clinicians' expectations that a good conversation about which option fits best, takes much time, especially when relatives of the patient are involved.
Facilitators: Sufficient training in SDM and in team collaboration, and all other facilitators described in the previous steps.
Facilitators: The availability of PROMs scores that can better prepare medical professionals and patients for a discussion about quality of life (harms of treatment), and for SDM. All facilitators described in the previous steps.

Facilitators:
Training of professionals in SDM. All facilitators described in the previous steps.
( Continues) with SDM, patients' preferences are described to be heavily influenced by clinicians' advice in the projects.

| Decision talk
When there is equipoise of options, such as for early-stage lung cancer, decision talk is often explicitly initiated, mostly after patients have PROMs information about outcomes of options in terms of quality of life seems to be scarcely used. This latter finding corresponds to a recent study, 40 showing that professionals stressed the opportunity to monitor changes in individual PROMs over time but not so much aggregated PROMs to make treatment decisions.
Option talk appeared to be practiced to some extent, but the other SDM steps (team talk, choice talk, and decision talk) were more difficult to achieve. The mere availability of PROMs, although helpful, is not sufficient for achieving SDM in VBHC initiatives. Team talk should be emphasized as a key step in training of professionals, because lack of team talk typically leads to suboptimal implementation of the subsequent steps. 55 More attention is also needed for the integration of PROMs in choice talk. This talk about the trade-offs between patients' values is a core element of both SDM and VBHC's "personal value", but also known to be difficult to apply. 15 Yet training of professionals in choice talk will probably not provide the magic bullet, given their limited time for the consultation. 13 The use of decision aids as well as patient activation tools (eg, Ask 3 Questions Campaign 90 ) could further enable clinicians practicing choice talk and probably also boost the integration of aggregated PROMs scores. 40 Although patients' health literacy was not explicitly addressed in the project descriptions, the difficulty of explaining PROMs information and activating patients in using information was mentioned. It is known that just providing numbers will not help patients in decision-making. [91][92][93] To help patients with correct interpretation of PROMs information in the consultation, risk communication guidelines from the SDM field may be helpful. 91,94-96

| Meso level
At the level of the department or organization, one key lesson is to continue to invest in training health care staff in SDM, not only in broad principles but also in the steps of the conversational model and the collaboration of the (multidisciplinary) team in trying to achieve this. In this training, attention should be devoted to the importance of SDM in delivering high value for patients, the employment of available PROMs and decision aids, and avoiding the silent misdiagnosis of patients' preferences and overtreatment. 2 In general, it also seems important to clearly instruct what SDM entails, because previous studies suggest the concept is often unclear for clinicians. 29,49 Another key insight is the need to allocate time for staff to explicitly deliver SDM and all of its steps. This means that more staff will likely need to be hired and/or innovations need to be adopted that implementing SDM first requires a one-time up-front investment to train staff in the processes and procedures linked to SDM and second requires a change in care pathways-overlaid onto both of these steps is culture change required within the provider setting to allow, facilitate, and actively promote SDM such that it becomes "business as usual.' SDM will likely yield return on investment once fully integrated into the culture and practice of organizations, mainly by patients' commitment to (less-invasive) treatment. Initial savings will offset the initial one-time up-front investment, thus allowing for subsequent savings to actually generate a return on investment.

| Macro level
At the system level, there need to be policy drivers and centrally coordinated initiatives to support key aspects of SDM, especially team talk and choice talk. 8,29 In the Netherlands, there is already investment from central institutions into SDM implementation programmes and use of PROMs in medical encounters. 37 One underexposed aspect, however, is the availability of subsidized good-quality training programmes on SDM across the country. Financial incentives may be needed to facilitate the use of SDM training and decision aids 7 ; in the Dutch context, these financial incentives would also need to be delivered through health insurance companies. 29 However, one macro level aspect that should be acknowledged is that professionals are not only expected to work with PROMs and SDM but also within organizational systems such as stepped care. 84 Eventually, this might lead to questions about the freedom that professionals have to use PROMs and SDM, when they also need to achieve technical and allocative/population value.
Those dilemmas and accompanied learning objectives related to both SDM and other aspects of high value health care delivery could be more explicitly incorporated into medical curricula, to become part of clinicians' routine thinking and practice. In the Netherlands, SDM learning objectives have been adopted in medical curricula to some extent, but this implementation has not reached its full potential. 8,29 In line with the conceptualization of Montori, 100 and the Dutch Council for Health and Society, 5 we believe that it is SDM and sensitivity to patients' values and context (or "personal value') that should be the main objective of training future clinicians and not merely outcomes over costs.
Another lesson learned is that central investment in high-quality and standardized decision aids, option grids, and quality standards as is now practiced in the Netherlands 101 will continue to be of great importance. We recommend to also include preferred presentation formats of dashboards in those quality standards. An important question is whether current decision aids adequately take account of value clarification, as studies have not yet revealed best practices. 57,102 In addition, investment in research into getting SDM into practice seems necessary, as well as in building better technology to integrate PROMs and SDM into routine practice and into value (outcomes/cost) derived from the routine use of SDM in practice to show to what extent value is being delivered.

| STRENGTHS AND LIMITATIONS
Combining analysis of literature on SDM and VBHC with insights from forerunner projects allowed us to assess current trends in using

| CONCLUSION
The use of individual, N = 1, PROM scores in the medical encounter seems to be relatively easily adopted by clinicians, mainly for monitoring and management of the patient's condition. In theory, this information could greatly enhance choice talk (ie, value clarification) in SDM, but training of professionals seems necessary. Easy access to information about the existence of preference-based decisions and to aggregated PROMs scores could give a further boost to SDM. Education, and staff resources on meso and macro levels may facilitate the more time-consuming SDM aspects.