On November 2, 2017, NYSHealth hosted a conference to explore two areas central to its Empowering Health Care Consumers priority area: patients as partners and information transparency.

Dr. Elisabeth Rosenthal, Editor-in-Chief of Kaiser Health News, former reporter for The New York Times, and author of An American Sickness: How Healthcare Became Big Business and How You Can Take It Back, delivered the keynote speech, addressing the transition of health care from a mission-driven charitable enterprise to a profit-driven industry. Dr. Rosenthal emphasized this disconnect by asking, “what is our country actually investing in,” if not health. During a Q&A session, moderated by David Sandman, President and CEO of NYSHealth, Dr. Rosenthal argued that doctors have a duty to work with patients to help them find the best value for their care. Physicians should educate themselves about the cost of services and drugs, as well as open the door to discussions with patients about price and value.

Dr. Rosenthal concluded with calls to action, including encouraging hospitals to publish chargemasters and requiring insurers to have up-to-date provider directories. She also urged patients to “have their antenna up” when engaging and partnering with their doctors to discuss value. Consumers should make health care part of their politics, and hold hospitals accountable. She ended by noting that the place to start is with transparency and tackling drug prices.

Following the keynote, the first panel, “Expanding the Table: Patients as Partners,” highlighted the power and effect of patient and family caregiver stories, as well as what the health care system can do to more effectively engage and partner with patients and families to deliver high-quality care. Sharrie McIntosh, NYSHealth Vice President for Programs, moderated a panel comprising patient and family advocates:

  • Pete Daly, Advocacy Faculty, Center for Patient Partnerships, University of Wisconsin-Madison
  • Gwen Darien, Executive Vice President for Patient Advocacy, Patient Advocate Foundation and National Patient Advocate Foundation
  • Michelle Johnston-Fleece, Senior Program Officer, National Academy of Medicine
  • Julia Lanham, Family Advisor, Carolinas HealthCare System

Panelists shared their personal stories of facing a serious illness, either as a patient or caregiver. Ms. Darien, a two-time cancer survivor, emphasized the importance of delivering care that reflects a patient’s values and preferences, as well as understanding that illness, health, and wellbeing are on a continuum. Mr. Daly described how, during his treatment for stage III melanoma, he experienced authentic moments of partnership with his providers, exemplified by their ability to listen, value, and prioritize. Ms. Lanham shared her story of transforming tragedy into effective action, relating the passing of her partner and reading a poignant letter she subsequently wrote to the hospital system where her partner had been a patient. The hospital responded by collaborating with her to make needed changes in the system. Ms. Johnston-Fleece shared how her experiences as a caregiver for her late husband made clear what providers must do to partner with patients—invite patients and families to participate; provide resources to support patient and family engagement; and empower people by recognizing and respecting their expertise about their own bodies, perspectives, and lives.

The second panel, “Transparency with a Purpose,” moderated by NYSHealth Program Officer Amy Shefrin, explored the power of transparency in health care. Panelists were:

  • Marshall Allen, Journalist, ProPublica
  • Representative Jim Butler, Ohio House of Representatives
  • Carine Carmy, Head of Strategy and Partnerships, Amino
  • Robin Gelburd, President, FAIR Health

The panelists shared common critiques of transparency, including low use of transparency tools by patients; the political minefields encountered when trying to spread price and quality transparency in health care; signs of progress toward greater transparency; and areas of the health care system that could benefit from more sunshine. Panelists also discussed how transparency tools can inform patients that price and quality vary and enable them to ask the right questions. Ms. Carmy made the case for how technology could create a cultural change for transparency in health care, and that it is unethical to claim that because existing price tools are underused, people do not deserve this information. Rep. Butler described the passage of a state law in Ohio that he led, requiring providers to give patients in advance a good-faith estimate of their costs for any nonemergency procedures, which began in January 2017. He talked about the political and legal resistance he has faced, but nevertheless expressed confidence that it was a sign his proposal was on the right track—“if the industry is for [an intervention] or is neutral on it, it’s probably not effective.” Mr. Allen described how patients have a right to know price and quality information, including doctor-specific quality information, as well as how, through his role as a moderator of ProPublica’s Patient Safety Facebook Group, he often encounters patients who feel betrayed by the health care system. Ms. Gelburd emphasized how patients can be armed with information, such as through the cost transparency website YouCanPlanForThis.org, so that they can make informed health care decisions, especially as they are increasingly expected to pay higher out-of-pocket costs.

Read biographies of the conference speakers.

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