What is Shared Decision Making (SDM)?
Shared decision making (SDM) refers to the process by which a decision is made. Patients and clinicians share information and come to agreement on preferred treatments. The terms SDM and informed decision making are often used interchangeably, though they differ in important ways. Both promote informed decisions, and neither presumes that the right course of action is known. However, informed decision making interventions need not involve clinicians nor occur in a clinical setting. Read more: Shared Decision Making Chapter
Why is shared decision making important?
Medical decisions are especially difficult when there are two or more reasonable options, and each option has good and bad features that people value differently. What is important for one person may be different for another, and no clear answer applies to everyone. Shared decision making interventions help people make more informed choices in partnership with their clinicians. Many medical organizations recommend SDM, and the Patient Protection and Affordable Care Act of 2010 supports a national SDM program. SDM and health care reform
What is the value of shared decision making?
SDM is relevant to many different types of decisions, and many argue that most health decisions are preference based. SDM is increasingly applied to more complex and higher-stakes decisions, such as choosing cancer treatment and deciding upon surgery. SDM is also highly relevant to chronic disease management. Patients with conditions such as coronary artery disease, diabetes, or asthma are often faced with a plethora of treatment options that have similar effectiveness but different side effects and costs. With adherence to medications for common chronic disease running as low as 40 to 50 percent, increasing attention is given to exploring whether SDM can be used to promote adherence. SDM can also help people facing complex clinical situations where they need to understand the future trajectory of decisions, where one decision can set them up for a series of future decisions. Read more here: Value of SDM
What is a Decision Aid?
A patient decision aid is an intervention designed to help a person decide among treatment options by providing objective information about the options and the likely consequences (harms and benefits) of each option. Common decision aids include videos, interactive web programs, or printed materials. Decision aids can help people become involved in decision making by making explicit the decision that needs to be made, providing information about the options and outcomes, and by clarifying their personal values. They are designed to complement, rather than replace, counseling from a health practitioner. They are usually designed to promote informed decision making, shared decision making, or both. Some are designed to ‘nudge’ or persuade people to adopt a certain behavior (for example, quite smoking, become more engaged). Read more: Shared Decision Making Chapter
Do Decision Aids work?
The impact of decision aids has been the subject of considerable research since the 1980’s, when the first randomized controlled trial of a decision aid was published. The most comprehensive source of evidence is the Cochrane Collaborative Review, a meta-analysis of over 100 published randomized controlled trials. This review found that decision aids helped patients take a more active role in making the decision, improved their knowledge, gave them more realistic expectations of the benefits and side effects of their options, lowered their feelings of being conflicted in making the decision, and helped them choose an option that was consistent with their informed values for outcomes of options.
Latest update from the Cochrane review on Decision Aids: CochraneReviews
How to Find a decision aid:
There is an online, searchable database of decision aids that also includes ratings of their quality. Note that it only includes decision aids that are available to the public free of charge. There are many more decision aids that can only be found by a google search. A to Z Inventory of Decision Aids
Standards for developing a decision aid:
The International Patient Decision Aid Standards (IPDAS) Collaboration was established to enhance the quality and effectiveness of patient decision aids by establishing an evidence-informed framework for improving their content, development, implementation, and evaluation. The standards are below.
Does the decision aid:
- Provide information about options in sufficient detail for decision making?
- Present probabilities of outcomes in an unbiased and understandable way?
- Include methods for clarifying and expressing patients’ values
- Include structured guidance in deliberation and communication?
- Present info in a balanced manner
- Have a systematic development process?
- Use up to date scientific evidence that is cited in a ref section
- Disclose conflicts of interest?
- Use plain language
Additional criteria if Internet-based of if stories are used.
Learn more here: IPDAS Standards
Measuring Shared Decision Making
How do you know if SDM actually happened? The right measure depends on who, when, and how you intend to find out, how intrusive you want to be. Unfortunately, there are few standardized measures of SDM antecedents, process, quality, and outcomes.
- If you can record the actual patient-provider encounter and have someone transcribe and review the conversation, then the OPTIONS instrument is a great choice: OPTIONS
What is the Rationale for Decision Aids?
12 published papers present an updated theoretical rationale, the current empirical evidence, and the emerging issues underlying each of these core evaluative dimensions. Learn more here: IPDAS Theoretical Rationale
Finding Good Evidence:
It is critically important that decision aids include the best scientific evidence. Here are a few sources of good evidence:
- The Cochrane Library
- Agency for Healthcare Research and Quality’s (AHRQ) Evidence Based Reports
- If you are determined to doing a google search, be aware that much of the information you find online may be misleading. Using Google Scholar will help.
Finding Clinical Guidelines
To understand the latest guidelines that professional societies recommend that doctors use, check out the National Guideline Clearinghouse: GuidelineClearinghouse
Designing a Robust Study of a Decision Support Tool
There are a lot of great resources. A good place to start is reviewing reporting criteria: Equator Network is an international initiative that seeks to improve the reliability and value of published health research literature by promoting transparent and accurate reporting and wider use of robust reporting guidelines. It includes the latest reporting guidelines for different types of studies.
Selecting Relevant Outcome Measures
It is important to select outcome measures that are most relevant to the research question and population of interest. Try to get input directly from patient informants, choosing people who are representative of the population of interest. Try to use existing core outcomes measures sets when these are available. There are several excellent searchable databases that can help you find appropriate outcome measures:
- COMET (Core Outcomes Measures in Effectiveness Trials): The COMET database currently contains 599 references of planned, ongoing and completed work. http://www.comet-initiative.org/
- GEM (Grid-Enabled Measures Database) is a community site for researchers that is designed to enable researchers to use common measures with the goal of exchanging harmonized data. It contains behavioral and social science measures organized by theoretical constructs. http://cancercontrol.cancer.gov/brp/gem.html
- PROMIS (Patient Reported Outcomes Measurement Information System) is a system of highly reliable, valid, flexible, precise, and responsive assessment tools that measure patient–reported health status. PROMIS uses modern measurement theory to assess patient–reported health status for physical, mental, and social well–being to reliably and validly measure patient–reported outcomes (PROs) for clinical research and practice. PROMIS instruments are generated from item banks. PROMIS’ measures can be used as primary or secondary endpoints in clinical studies of the effectiveness of treatment. http://www.nihpromis.org/measures/measureshome
Methods Training Materials
If you are getting started in the field and want some additional training, check out the following:
- AHRQ Training Modules for the Systematic Reviews Methods Guide
- Training Modules for the Methods Guide for Medical Test Reviews
- Training Modules for the User’s Guide for Developing a Protocol for Observational Comparative Effectiveness Research
- Patient Centered Outcomes Research: PCORI has developed a series of methodology papers. http://www.pcori.org/research-
- Understand what’s important to patients: the theoretical and empirical evidence related to the use of values clarification methods in patient decision aids. Clarifying values: an updated review
Regional variations in care:
You can explore how clinical practice differs according to geography by exploring the Dartmouth Atlas
Be part of the Shared Decision Making Community:
Join Facebook network: Shared@EACH – Shared Decision Making Network