Imagine an 86 year-old patient who is diagnosed with terminal cancer. One day, the patient suffers a mild stroke, falls down, and breaks her hip. She is admitted to a hospital, where a doctor says she has around three to nine months to live. If she receives a hip-replacement, there is a high chance her weak heart will not hold out for the surgery. But if she does not receive the replacement, she will painfully suffer through her remaining days. This is precisely the dilemma President Obama faced when his terminally ill 86 year-old grandmother, Madelyn Payne Dunham, broke her hip two weeks before she passed away in 2008. When asked how to approach difficult medical decisions, Obama said, “…there is going to have to be a conversation that is guided by doctors, scientists, ethicists” and ultimately, patients (Leonhardt, 2009, p. 6).

This “conversation” is the core theme of a new approach of delivering medical care known as shared decision-making. Section 936 of the Affordable Care Act (ACA) defines shared decision-making as:

A collaborative processes between patients, caregivers or authorized representatives, and clinicians that engages the patient, caregiver or authorized representative in decision-making, provides patients, caregivers or authorized representatives with information about trade- offs among treatment options, and facilitates the incorporation of patient preferences and values into the medical plan (United States, Congress, House 409).

In short, shared decision-making is a discussion between a patient and a physician meant to find the “right” treatment option when the relative risks, benefits, and costs of multiple medical treatments are uncertain. Shared decision-making is an integral part of health care reform because it redefines the patient-doctor relationship, emphasizes informed consumer choice, and has the potential to provide higher quality care at lower costs.

To facilitate shared decision-making, “decision aids” – medical information in the form of software, pamphlets, and other media – have become popular tools to help

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patients make better choices about various medical treatments. Over the past decade, decision aids have gained relative popularity among physicians because of their potential to improve quality and control costs (O’Connor et al. 1). To expand the use of decision aids, Section 936 of the ACA presents guidelines for funding, developing, certifying, and implementing decision aids in the US healthcare system (United States, Congress, House 409). However, while there are many proven benefits of decision aids, their cost saving potential has led to the entry of for-profit decision aid developers and insurers into this lucrative new market. Indeed, the content and presentation of information in decision aids have profound effects on patient treatment choices with health consequences.

Given the risks of an unregulated decision aid market, the federal government has a responsibility to protect patients by a) requiring developers to be non-profit, and b) promoting the establishment of a nongovernmental organization of physicians and decision scientists that studies and creates unbiased decision aids.

Read the full paper here.