People facing serious illness and disability have always had to contend with the financial impact of their care on their lives. Those who have no insurance or are under-insured have suffered the highest level of financial toxicity, but people of all socioeconomic backgrounds feel the effects of the costs of their care. Mounting medical bills, increasing copays and cost sharing and the emergence of more effective but high-priced treatments for many conditions all contribute to the financial burden. Costs-of-care influence decisions about treatment, but also have a significant impact on the lives of patients and their families. It is not unusual for people to have to choose between buying groceries or paying for their medical care. It is critical that patients and their providers talk about cost-of-care issues and that these conversations are incorporated into the clinical workflow.
In 2017, the Robert Wood Johnson Foundation funded eight exploratory research projects designed to increase the awareness of the importance of cost-of-care conversations and to develop approaches to integrating these discussions into patient/provider interactions, especially with vulnerable and underserved populations. RWJF has continued this work with coordinated efforts to expand and disseminate this work by funding four partners with specific audiences. This site is a forum for presenting the work done by the RWJF grantees and partners and sharing new ideas, best practices and pertinent data related to cost-of-care discussions. We will continue to add to the site as the work progresses and invite your contributions to this site.
Message from Alan Balch, PhD
Chief executive officer Patient Advocate Foundation National Patient Advocate Foundation
At the Patient Advocate Foundation, our case managers talk to hundreds of thousands of patients and caregivers every year. Virtually every one of these people contacts us because they are confronting serious issues related to the costs of their medical care. It may be problems with their insurance coverage, the inability to pay, or even comprehend the bills that are piling up, agonizing questions about how balance the costs of their medicines or care with the day to day demands of their life. Most people, even those who are educated, understand very little about the health care system and how it works until they become seriously ill or disabled. Patients and their health care providers have to talk about these issues, up front, regularly and as a normal part of the treatment decision making process.
Our data from Patient Advocate Foundation surveys demonstrates clearly that patients want and need to have these conversations, but often do not. Patients may be reluctant for a variety of reasons, to bring up their financial concerns. Physicians are often uncomfortable talking about the costs-of-care or do not believe it is their role. Both patients and physicians often lack the skills and tools to facilitate these conversations. The Robert Wood Johnson Foundation is one organization that has taken a lead in bringing cost-of-care to the forefront and developing ways of integrating discussions about the financial impact of care into the clinical workflow. We are proud to be a partner in this effort and to continue to advance person-centered care for every patient.
Conversations on Cost of Care Webinar Series
Resources from other RWJF Grantees and a Summary of the Research
Cost of Care Discussion Guide
Clinicians as Change Agents: Interviews with National Clinician Scholars at University of Pennsylvania