Table 2.

SDM and use of PROMs/ROM in routine medical encounters: experiences of Amsterdam UMC at the VUMC campus and Dutch specialist mental health care

General characteristics	Pilot 1: MS   Number of patients included thus far: 25   Number of centers involved: 1 (Amsterdam MC center)   Number of different disciplines involved: 6 (neurologists, rehabilitation clinicians, MS nurses, psychologists, physiotherapists, and welfare workers).   Period: one year	Pilot 2: Lung cancer   No patients or institutions included yet. The aim is to include 3 institutions.   Number of different disciplines involved: needs to be defined. In any case, pulmonologists, thoracic surgeons, radiotherapists, psychologists, and nurses involved.   Period: one year	Pilot 3: Mental health care Number of patients included thus far: unknown   Number of centers involved: 21   Number of different disciplines involved: 3 (Clinicians, psychologists, and nurses).   Period: one year
General approach	Approach: MS patients, together with health professionals, created a list of 25 outcome parameters, based on validated questionnaires, related to symptoms associated with MS.   Before the annual check‐up at the MS center, the patient receives online questionnaires resulting in a digital PROMs list accessible for patient and health care providers after filling out. At the end of the questionnaires, the patient can select topics he/she wants to focus on in the annual check‐up, which informs the composition of health care providers that will join the interdisciplinary outpatient evaluation during the annual check‐up.	Approach: LC patients, together with health professionals, create a list of outcome, related clinical outcomes, PROMS and PREMS.   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.	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 ROM‐questionnaires digitally at home or at the mental health care organization. Clinicians are provided with a SDM‐ROM conversation model (see Table 1).
Monitoring and management: Discussing individual, N = 1, PROMs scores with patient before, during, and after care delivery including trends over time	Approach: During the interdisciplinary outpatient clinic, the PROMs scores (N = 1) are visualized on a dashboard. The idea is that in addition to common physical symptoms (eg, deterioration in walking and seeing), less visible symptoms (eg, pain, fatigue, and sexual problems), and/or symptoms as prioritized by patients, are being monitored and managed.	Approach: During routine medical encounters, the PROMs scores (N = 1) and clinical outcomes are visualized on a dashboard. Both the weekly registered 12 symptoms and the PROMS monitored every 3 months can be used in discussions about management and treatment. Both types of information are thought to provide input for decisions about (continuation of) treatment and for clinical evaluations of potential cancer recurrence. In general, PROMs will be used as input to discuss with patients what they want to achieve with treatment.	Approach: ROM results (N = 1) are visualized on a dashboard. Patients get insight into their own ROM results by a patient portal or by the clinician (who can make a print out for the patient). During treatment encounters, patients are asked what they want to achieve in treatment (see step 1 in Table 1), and patients and clinicians give meaning to ROM results together and use ROM as an input to evaluation of current treatment (see step 2 in Table 1).
	Barriers: Accessible and good working technology platform	Barriers: The time needed for nurses to send questionnaires at the right time   Accessible and good working technology platform	Barriers: Currently patients are dependent on the (attitude of the) clinician for the feedback of ROM‐results, because implementation of patient portals for viewing results independently is in an initial phase.
	Facilitators: Support of the management team of the hospital   Advanced visualization of the bars and graphs of the PROMs scores (N = 1)	Facilitators: Support of the management team of the hospital	Facilitators: Development and implementation of ROM together with clinicians and patient representatives. Support of management and secretary (for logistics and planning).
	Blind spots: Professionals, especially neurologists, tend to focus on physical limitations and less on non‐visible complaints, like cognition, fatigue, and pain. The question is to what extent the other symptoms are sufficiently addressed in the patient's visit to the Neurology outpatient clinic.   There is no specific approach on how to support patients in discussing and interpreting PROMs results with their clinicians	Blind spots: Professionals may focus on the 12 symptoms for rapid diagnostics and not so much on the use of PROMs for SDM.   There is no specific approach on how to support patients in discussing and interpreting PROMs results with their clinicians	Blind spots: There is no specific approach on how to support patients in discussing and interpreting ROM results with their clinicians, and how they can use these results in SDM.
SDM step 1: Team talk (Indicating that the patient has a choice and offering assistance in this choice as a professional)	Approach: Patients are invited to select topics he/she wants to focus on in the annual check. There is no specific strategy yet to subsequently address patient participation in the decisions to be made about treatment and management.	Approach: For stage I non‐small cell LC, patients are routinely informed about the equipoise of options (surgery versus stereotactic ablative radiotherapy [(SABR)]) by the pulmonologist, and invited to participate in the treatment decision.   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.   Advanced stages of LC: Rapid progress in the scientific literature about the outcomes of treatment, difficult for professionals to keep up and judge whether there is equipoise and how to include patients in the decision.   Lack of time.   Lack of training of professionals in SDM.	Barriers: Insufficient awareness among clinicians of the importance of team talk (step 1 in Table 1).
	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.	Blind spots: It may be that clinicians will continue to aim at treatment and skip the stage of team talk, because from a medical perspective, there is no equipoise of options (for advanced stages of LC). However, for patients this is likely to be different. A question is how patients will be invited to express their concerns based on the PROMs scores.	Blind spots: Insufficient awareness among patients that they can participate in decision‐making. Clinicians do not pay enough attention to this first step. Too little personalized support for patients to participate in decision ‐making.
SDM step 2: Option talk (Communicating about treatment options and their risks and benefits (i.e., risk communication) e.g,. using option grids or PDAs)	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 non‐treatment 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.	Approach: For stage I non‐small cell LC, patients are routinely informed about the options and their main benefits and risks (surgery versus stereotactic ablative radiotherapy [(SABR)]). Patients are given the web link to a decision aid that provides this info.   For advanced stages of LC, there is no standard approach to communicate about treatment versus no‐treatment and the associated benefits and harms. Professionals base their advice on the evidence in the medical literature.   Options outside the clinic are routinely discussed based on PROMs scores, such a visit to a medical psychologist or a dietician.	Approach: Based on the individual, N = 1, ROM results and other sources of information (http://www.ggzstandaarden.nl; http://www.thuisarts.nl; local clinical pathways), options with their risks and benefits are discussed with the patient, in a neutral manner. (See step 3 Explore options [(conversation model SDM using ROM, Table 1)]).
	Barriers: Insufficient knowledge among professionals and patients about all potential treatment/management options, also in primary care.   Lack of decision aids or option grids that facilitate comparison of different options, time needed to wait for a new release of clinical guidelines.   No access yet to aggregated PROMs scores, so information about benefits and harms of treatment options is incomplete.	Barriers: Lack of decision aids or option grids that facilitate comparison of treatment versus no‐treatment for advanced stages of LC.   No access yet to aggregated PROMs scores for advanced LC stages, so information about benefits and harms of treatment options is incomplete.   Lack of training of professionals in SDM and the importance of option talk.	Barriers: Teams have insufficient overview about all options inside and outside the mental health care organization.   Lack of decision aids or option grids that facilitate comparison of different options. Development of prediction models are is in an initial phase; as a result, limited knowledge about benefits, harms, and its probabilities.   When new evidence is available: time needed to refer to it in quality standards and to implement these insights in clinical practice.
	Facilitators: Training of professionals in SDM.   Training of professionals in how to collaborate as a team.	Facilitators: Stage I non‐small cell LC: availability of a decision aid for patients.   In oncology, professionals have a long tradition of referral to other healthcare providers such as psychologists or dieticians. There is, thus, a good overview of options outside the medical field.	Facilitators: Training, booster sessions and supervision of clinicians in SDM.   Availability of quality standards, which describe all treatment options in mental health care from the perspective of patients, are is published nationally. (http://www.ggzstandaarden.nl) Patients could prepare by reading the patient version (http://www.thuisarts.nl). Clinicians could use the standards to get an overview of treatment options.
	Blind spots: There is no (comparative) information on costs of different treatment/management options, which is often important for patients in decision‐making.	Blind spots: There is incomplete information about benefits and harms of treatment options, especially experienced quality of life (aggregated PROMs scores).   Limited insight among clinicians into the importance and difficulty of exploring treatment options in a neutral way.	Blind spots: Limited insight among clinicians into the importance and difficulty of exploring treatment options in a neutral way.
SDM step 3: Choice talk (Inviting the patient to express his or her preferences and underlying values (value clarification), and discussing the trade‐off between those values, e.g., using value clarification methods or PDAs)	Approach: During the interdisciplinary outpatient clinic, the patient and his/her care givers are routinely invited to express their preferences and values between the different treatment options. The idea is that the individual, N = 1, PROMs scores and their answers in the questionnaire will help patients in expressing those preferences and values, and this in choice talk.	Approach: During medical encounters before treatment (or no‐treatment) is chosen, patients are routinely asked the questions that they find important in their current life and what they aim for by treatment. The idea is that the individual, N = 1, PROMs scores will help patients in answering those questions.	Approach: During treatment encounter, the clinician invites the patient to weigh the risks and benefits of options, based on the starting question “What is important for you?' The idea is that the individual, N = 1, ROM results will help patients in choice talk by answering this question. (See step 4 Weigh options ([conversation model SDM using ROM, Table 1)]).
	Barriers: Lack of decision aids that facilitate more thorough value clarification and preference construction.   Insufficient training of professionals in eliciting/diagnosing patients' values and preferences.	Barriers: Lack of decision aids that facilitate more thorough value clarification and preference construction.   Insufficient training of professionals in eliciting/diagnosing patients' values and preferences.	Barriers: Lack of invitation by professionals and lack of (personalized) tools (i.e., decision aid material) that can support patients in participating in choice talk more actively.
	Facilitators: Training in SDM and developing communication tools	Facilitators: 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.	Approach: The clinician and patient discuss whether a choice can be made, select the most appropriate option and make follow‐up appointments. (See step 5 Shared decision [(conversation model SDM using ROM, Table 1)]).
	Barriers: All barriers described in the previous steps.	Barriers: Lack of time to truly have a good conversation about what preferences of the patient can mean for the decision.   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.
	Blind spots: Costs. It is uncertain whether and to what extent this new annual check‐up in which patients are explicitly involved in treatment decisions will create additional therapeutic sessions and whether this will be less or more expensive in the long run.	Blind spots: Training in SDM and how to deal with the question of equipoise; clarifying the decisions that are suitable for SDM.	Blind spots: How to involve relatives of patients in decision‐making in short term treatment (in long term treatment involvement of relatives is already more common).   Does the patient need more time to make a decision?   Making follow up appointments.