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The Summit is more discussion and brainstorming than prepared presentations. The theme is high-level: how can healthcare stakeholders work collectively to enable and support Shared Decision Making broadly. Hence, the pre-identified topics below have been articulated more as an aid to identify who should attend, than as rigid discussion guardrails. Accordingly, while these topics will be "teed up" by experienced SDM professionals, attendees have the liberty to take the discussion where it would be most fruitful.
Topic 1:Shared Decision Making and Clinical Trial EnrollmentThe decision to enroll or not in a clinical trial can be overwhelming, complex, and unclear for patients. Decision theory strongly suggests that if people are unclear, they don't enroll. Accordingly, some patients likely miss out on treatments that might be the best option for them. Furthermore, this leads to slower enrollment, poor adherence to therapy, and slows the development of new drugs. If we can achieve greater clarity, patients, sites, and the pharmaceutical industry might all "win”. Questions to be discussed include:
Recommended Attendees:
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Topic 2:From Averages to Individuals: Patient-Centered Data and Prescribing, Paying, and Adherence DecisionsEven when a clinical trial is not on the potential treatment list, making a medical treatment decision is still often an overwhelming and complex process for patients. There are often many treatment options, including medications that might be good alternatives. Patients want information about how medications work on their specific body. Will this drug work for my body given my personal situation, genetics, and other conditions? What is the likelihood that my body will experience adverse events? Which will I experience, and how bad will they be? Traditionally pharmaceutical companies conduct research studies that provide data about how medications perform on average. While an appropriate frame for a regulatory agency’s decision to approve a drug or not, this leaves ambiguity for providers, payers, and patients. Questions to be discussed include:
Recommended Attendees:
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Topic 3:Creating a Cultural Shift: Patients as Empowered Decision MakersShared decision-making is intended to be a two-way conversation; however, research shows that many patients do not actively cultivate ongoing discussions with their health care providers about their adherence to medications, medical treatment options, questions, and concerns. In what ways could stakeholders better support the efforts of independent organizations that are working to empower patients as consumers and equip them to participate fully in shared decision-making? Questions to be discussed include:
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Topic 4:Encouraging and Equipping Providers to Become Decision FacilitatorsA patient's health care providers (including the prescriber, but also the extended care team – nurses, pharmacists etc) play a significant role in the shared decision making process, from communicating available options/risks/benefits to eliciting a patients values and preferences. Several of those skills are new to many providers and something they must learn. In what ways could stakeholders (pharmaceutical industry, payers, etc) better support the efforts of independent organizations that are working to train current and future healthcare providers and equip them to participate fully in shared decision-making within the constraints of their workflow? Questions to be discussed include:
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