Shared Decision Making

Shared decision making can result in improved patient care as well as care that is more efficient and cost effective. When patients are involved in making decisions about their health, resources are used more appropriately.

However, the phrase, “information is power” is too often used these days as a sales pitch by testing companies to increase uptake of tests or procedures. The Genetic Support Foundation believes that in order for information to be truly powerful, it must be delivered with context. What would this information mean in your particular patient’s life? When it comes to genetic testing, the decision to have or not to have testing can be life-changing.

Some examples of shared decision making-facilitating questions to ask during pregnancy with regard to genetic testing options include the following:

  • How will you feel if this screening test comes back indicating a high risk?
  • Would you want to go on to a diagnostic test to find out for sure if the baby has a genetic condition or not?
  • How could this information affect your course of action and how do you feel about the various possibilities?
  • Are you the type of person that likes to know as much information as you can to be able to prepare, or are you comfortable waiting until the baby is born to learn this information?
  • If your baby were found to have a genetic condition would it alter your decisions about the pregnancy? If not, are you comfortable waiting until the baby is born to know if he/she has a genetic condition?
  • Do you think prenatal genetic testing fits with your personal beliefs and values? Why or why not?

Much of the time, women are asked to make decisions about genetic tests and results without being given the opportunity to understand what the information will mean in their lives and what may follow. When a woman can identify a personal benefit that could result from genetic testing, it can be tremendously powerful. However, in many cases, genetic testing has little or no impact on patient outcomes, and may even cause patient distress as well additional work created for the healthcare system in follow-up.

Providing patients with the tools they need to make supported and truly informed decisions in the context of their own lives can make a significant difference in ensuring that patients who truly want testing are able to access it and those that do not are given the opportunity to decline it. Shared decision making helps achieve this goal.

Resources

The Ottawa Hospital Research Institute
The Ottawa Hospital Research Institute provides useful resources regarding shared decision making including online tutorials for providers as well as links to tools for use in practice. They highlight a wide range of clinical scenarios from prenatal genetic testing to cancer screening.

Choosing Wisely

“Choosing Wisely® is an initiative of the ABIM Foundation to help providers and patients engage in conversations to reduce overuse of tests and procedures, and support patients in their efforts to make smart and effective care choices.”- Choosing Wisely

Peer Reviewed Literature

Shared decision-making: easy to evoke, challenging to implement.
Kuppermann M, Sawaya GF. Shared decision-making: easy to evoke, challenging to implement. JAMA Intern Med. 2015 Feb;175(2):167-8. doi: 10.1001/jamainternmed.2014.4606. No abstract available.

This  commentary provides an excellent overview of the importance of shared decision making. Kuppermann and Sawaya assert that the role of the clinician is to act as the expert in health outcomes and provide objective information about the potential outcomes given various health decisions around screening. The patient is the expert in knowing how she would feel if she experienced various outcomes and should have the opportunity to communicate her feelings, preferences and values about various choices. The authors acknowledge that shared-decision making models are challenging due to time and economic constraints and suggest that decision aides may be helpful.