Evidence-Based Practice Research Program

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Shared Decision-Making Program

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Minimally Disruptive Medicine Program

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Patient Revolution

Health care is a confusing, messy space for everyone, but perhaps most especially for patients. They are the least practiced and most overlooked participants in an experience that is supposed to revolve around their issues, needs and goals.

Patients should be full partners in clinical conversations, but they occupy a vulnerable and risky position as they sit in that exam room or hospital bed deciding what questions to ask, what life realities to reveal, and what doctors' orders to follow.

Speaking up in that situation is the most powerful thing patients can do, but to expect them to find the skills and strength to do that entirely on their own is to ask too much. Patients need and deserve help.

The goal of the Patient Revolution is to assist patients in the transformation of health care through their individual advocacy and their collective action. A transformed health care is one that fundamentally cares about patients, their loved ones and their communities, and it begins with patients who can articulate the issues, histories, concerns and values that uniquely define them.

By teaching and supporting patients to have conversations with clinicians — conversations that today do not happen or happen poorly — we can begin the transformation toward health care that cares.

Program and activities

The work of the Patient Revolution has focused on developing a deep understanding of the issues keeping patients from speaking up in their clinical encounters and then setting out to build clinical and community interventions that help patients overcome those barriers.

  • Barriers report. A monthslong research initiative led to the identification of barriers that inhibit patients in the clinical setting, including:
    • A reluctance to ask questions or ask for clarification because of a fear of burdening the clinician or being perceived as difficult
    • The perception that a patient's life context doesn't have much bearing on the development of a care plan
    • The implied sense of urgency attached to all medical decision-making
  • Patient stories library. In an attempt to raise awareness about the unseen factors contributing to patient engagement, we are gathering stories from patients about their exam room and hospital room experiences.

    A set of cards developed from the barriers helps to focus the story gathering on these often-unspoken elements of a clinical encounter and sheds light on the "black box" of the doctor's visit.

  • Reflection document. The reflection document is a tool to allow patients to reflect on dimensions of their lives (family and friends, work, home, finances, and more) and whether these areas represent sources of satisfaction, burden or both.

    The tool is designed to be used in the waiting room, with the hope that it prompts patients to bring the insights these reflections reveal into their clinical encounter.

  • Care Conversation Workshops. Building on the belief that practice is the best way to get better at something, these two-hour workshops lead a small group of patients through exercises to reflect on how their lives impact their health, identify stories and issues they would like to share with their clinician, and create an outline and practice environment for that conversation.
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  • Social shared decision-making. Conversational tools for shared decision-making in the clinical encounter are a strength of our team.

    This initiative looks to bring those tools and the medical evidence contained within them outside the clinical environment into the community, creating forums for shared dialogue about topics ripe for patient engagement.

    The first topic we are going to explore using the social shared decision-making approach is mammography screening for women in their 40s.

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