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1 Introduction On February 25 and 26, 2013, the Institute of Medicine’s (IOM’s) Roundtable on Value & Science-Driven Health Care, with support from the Gordon and Betty Moore Foundation and the Blue Shield of California Foundation, hosted a workshop, called Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement. The goals of the workshop were to identify and explore issues, attitudes, and approaches to increasing patient engagement in and demand for (1) shared decision making and better communication about the evidence in support of testing and treatment options; (2) the best value from the health care they receive; and (3) use of the data generated in the course of their care experience for care improvement (see Box 1-1). The focus was on building awareness and demand from patients and families for better care at lower costs and to create a health care system that learns and improves continuously. BOX 1-1 Statement of Task An ad hoc committee will plan and guide the development of a 2-day public workshop to identify and explore issues, attitudes, and approaches to increasing patient demand for a learning health system. Central to a learning health system is increased patient engagement in and demand for meaningful participation in the process of knowledge generation, shared decision making to select tests and treatments, and in the value of expenditures on health care. The committee will steer development of the agenda for the workshop, including selection and invitation of speakers and discussants, and moderate the discussions. The discussions will highlight what is known about patient attitudes, behaviors, and motivations related to evidence, shared decision making, costs and prices in care, privacy, and use of data to improve the effectiveness and science base for care. They will also address concrete steps that must be taken to increase patient demand and approaches for their achievement. Chaired by Christine Bechtel, an advisor and former Vice President of the National Partnership for Women & Families (NPWF), the workshop represented a partnership among members of the medical, clinical research, health care services research, regulatory, health care 1
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economics, behavioral economics, health care delivery, payer, and patient communities. Workshop discussions focused on • building insights on and recognition of the necessity of increased patient, family, and citizen engagement in achieving better outcomes and lower costs in health care; • exploring what has been learned about effective approaches for building patient demand and involvement in improving evidence, care, and value—including principles and barriers; • considering strategies and policies for activities to be undertaken at multiple levels to advance patients, in partnership with providers, as leaders and drivers of care delivery improvement through the protected use of clinical data, informed shared decisions, and value improvement; and • identifying important policy and research opportunities for developing the additional insights needed to accelerate progress. Strong efforts were made to include members of the patient community, and a number of patients and patient representatives were speakers, active discussants, and workshop attendees. The publication of the workshop proceedings provides the Roundtable with a broader mechanism to inform not only vested stakeholders, but also other interested parties about what transpired at the workshop. The workshop proceedings should not be confused with a National Academies consensus report. The proceedings do not contain findings or recommendations endorsed by the National Academies or the IOM, the Roundtable, or the Planning Committee. Opinions and statements included in the proceedings are solely those of the individual persons or participants at the workshop, and are not necessarily adopted, endorsed, or verified as accurate by the National Academies. What follows in Chapters 2 and 3 are the proceedings of the meeting. Embedded in this are important lessons for the reader. The proceedings have been edited to eliminate grammatical errors. In addition, workshop speakers were provided an opportunity to edit their remarks to ensure clarity and accuracy of statements. Corresponding PowerPoint presentations may be downloaded from the workshop website (www.iom.edu/patientdemand). A copy of the workshop agenda (Appendix A), biographies of the workshop speakers (Appendix B), and a list of the workshop registrants (Appendix C) are appended. 2