Measures, Data, and Funding for Shared Decision Making Research
New research on shared decision making (SDM) is needed to further describe the impact of SDM on patient and provider experience and health outcomes. Research is also needed to evaluate the most effective methods for implementing SDM and engaging patients in decisions about their own healthcare. AHRQ promotes research on SDM through the development of SDM measures, and through data and funding opportunities.
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Shared Decision Making Measures
Measures of SDM allow researchers and practitioners to evaluate the level of SDM in a clinical encounter. This is an important part of assessing healthcare quality, provider performance, and the effects of interventions intended to promote SDM.
Previously developed measures of SDM include patient-reported, clinician-reported, and observer-reported instruments. Below we cite some of the most used SDM measures.
Patient-Reported SDM Measures
SDM-Q-9
A 9-item SDM questionnaire that measures the extent to which patients felt involved in the process of decision-making. The measure was developed for use in research and clinical practice. A clinician-reported scale (see below: SDM-Q-Doc) was developed alongside this instrument.
SDM Process_4 (SDMP) Survey
A 4-item questionnaire that measures the extent to which patients viewed healthcare providers as engaging them in SDM. The questionnaire focuses on four behaviors that are essential for SDM—discussion of options, benefits, risks, and patient preferences.
CollaboRATE
A 3-item questionnaire that patients, their parents, or their representatives complete following a clinical encounter. This instrument was developed for use in research and practice and is available in several languages.
SURE scale
A 4-item questionnaire that assesses a patient's level of decisional conflict. The 4 items in this instrument are based on core concepts of the Ottawa Decision Support Framework, including: feeling uncertain, feeling informed, feeling clear about values, and feeling supported in decision making.
Clinician-Reported SDM Measures
A 9-item SDM questionnaire that measures physicians' perceptions of their own use of SDM strategies and patients' involvement in the decision-making process. The measure was developed for use in research and clinical practice. A patient-reported scale (see above: SDM-Q-9) was developed alongside this instrument.
Observer-Reported SDM Measures
A 5-item questionnaire, used by an observer of a clinical encounter, that measures the extent to which clinicians involve patients in decision making . OPTION(5) was designed as a more efficient version of OPTION(12) (see below).
A 12-item questionnaire, used by an observer of a clinical encounter, that measures the extent to which clinicians involved patients in decision making.
A 7-item questionnaire developed to observe participation in decision making for older patients with multiple chronic conditions (MCC). The OPTION MCC is based on the dynamic model of shared decision making in frail older patients. It builds upon the Three-talk Model, adding "goal talk" (the identification of goals of care) as a distinct item in the scale. In addition to rating clinician behavior, observers rate participation of patients and informal caregivers, reflecting the “triadic” decision making process.
AHRQ-Funded SDM Measurement Projects
Through the now closed PA-16-424: Developing Measures of Shared Decision Making (R01), (researches can still apply for grants in SDM measurement research through standing general program announcements) AHRQ has funded several completed and on-going grant projects to develop, test, and evaluate new measures of SDM that can be used for research in clinical settings:
- Developing and Validating an Adolescent and Parent Reported Measure of Pediatric Shared Decision Making (Carle, Adam; Lipstein, Ellen. Cincinnati Children's Hospital Medical Center)
- Development of a Shared Decision Making Support (SDM-S) Measure for Use with Team-based Care (Elston-Lafata, Jennifer. University of North Carolina, Chapel Hill)
- SDMo–a measure of the occurrence of SDM in the care of patients with chronic conditions (Hargraves, Ian. Mayo Clinic)
- Developing a Standardized Process Assessment for Relationship-Centered Shared Decision-Making (SPARCSdm) (Mallinson, Trudy; Papadimitriou, Christina. George Washington University)
- Adapting & Evaluating Measures of Decision Quality for Common Medical Decisions (Sepucha, Karen. Massachusetts General Hospital, Harvard Medical School)
Associated Publications:
- Evaluation of the Shared Decision-Making Process Scale in Cancer Screening and Medication Decisions (2023)
- Using Standardized Videos to Examine the Validity of the Shared Decision Making Process Scale: Results of a Randomized Online Experiment (2022)
- Pediatric Caregiver Version of the Shared Decision Making Process Scale: Validity and Reliability for ADHD Treatment Decisions (2022)
- Recommendations for Preoperative Assessment and Shared Decision-Making in Cardiac Surgery (2020)
- Impact of Timing on Measurement of Decision Quality and Shared Decision Making: Longitudinal Cohort Study of Breast Cancer Patients (2019)
Shared Decision Making Data
SDM MEPS Items
AHRQ's Medical Expenditure Panel Survey (MEPS) collects data on shared decision-making in its household component. SDM is measured by a single question asked of people who report having a provider as their usual source of care:
- If there were a choice between treatments, how often would a medical person at {PROVIDER} ask you to help make the decision? Would you say never, sometimes, usually, or always?
These data have been collected annually since 2002. Researchers can conduct analyses of the data by downloading the MEPS Full Year Consolidated Files from the MEPS Download Data page. The SDM variable in the dataset is called DECIDE42.
SDM in Healthy People 2030
Healthy People 2030, a set of data-driven national objectives to improve health and well-being over the next decade, contains an SDM objective: Increase the proportion of adults who report that their healthcare providers always involved them in decisions about their healthcare as much as they wanted. Progress on this objective is tracked using data from the National Cancer Institute's Health Information National Trends Survey (HINTS), which was fielded biennially 2003-2007, then annually 2011-2014 and 2017-2020. Starting in 2022 HINTS will be fielded biennially again.
The SDM question in HINTS (variable name: InvolvedDecisions) is:
- How often did doctors, nurses, or other health professionals you saw during the past 12 months involve you in decisions about your health care as much as you wanted? Never, sometimes, usually, or always?
You can download data files from the HINTS website to conduct your own research. Find 2020 data on the SDM item.
SDM CAHPS® Items
The Consumer Assessment of Healthcare Providers and Systems (CAHPS®) is a family of surveys that ask consumers and patients to report on and evaluate their experiences with health plans, providers, and healthcare facilities. Supplemental items that ask about aspects of SDM have been developed for five CAHPS surveys.
The CAHPS team's research indicated that patient experience with SDM is best assessed by asking about a specific decision. For that reason, CAHPS supplemental items ask about starting or stopping a medication and talking about a procedure. These items can be used for internal quality improvement, or, with a large enough sample size and response rate, can be used for statistical analysis and reporting.
You can browse all CAHPS supplemental items on SDM. You can also access the full items and response options of SDM for each survey.
- CAHPS Clinician & Group Adult Survey
- CAHPS Clinician & Group Child Survey
- CAHPS Health Plan Adult Survey
- CAHPS Health Plan Child Survey
- CAHPS Cancer Care Survey
Funding Opportunities
SDM researchers may submit grant applications through AHRQ's notice of funding opportunities. Researchers may respond to targeted program announcements (e.g., Disseminating and Implementing Patient-Centered Outcomes Research (PCOR) Evidence into Practice through Interoperable Clinical Decision Support, Using Innovative Digital Healthcare Solutions to Improve Quality at the Point of Care), as well as ongoing program announcements (e.g., AHRQ Small Research Grant Program (R03), AHRQ Health Services Research Projects (R01), AHRQ Health Services Research Demonstration and Dissemination Grant (R18), AHRQ Mentored Research Scientist Career Development Award (K01).
