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Talking about the Costs of Health Care and the Impact of Financial Toxicity

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.

Data from the Patient Advocate Foundation Surveys on Cost-of-Care

Updates

NPAF Holds Fall Policy Consortium on November 29
The topic is the importance of Cost-of-care Conversations and features several of the RWJF grantees. See the full agenda.

Journal of Clinical Pathways features NPAF Columns on Cost-of-care
This two-part column written by Alan Balch examines the importance of cost-of-care conversations and provides information on how to implement these discussions as parts of clinical pathways. Read the full articles.

Read the Team Blog Post in Health Affairs, “Talking about Costs: Innovations in Clinician-Patient Conversations”

See America’s Essential Hospitals Resource Repository

Read Avalere’s Insights Article: “Providing Resources to Facilitate Cost-of-Care Conversations Between Patients and Clinicians.” 

Videos

Gwen Darien discusses her personal experience with medical debt and ways that people can be better advocates for themselves on cost-of-care issues.

Monica Grandovic’s MS led to issues with her career and mounting medical debt. She talks about the unexpected impact of her illness on her life

Patient Advocate Foundation case managers discuss how they help their clients become better advocates for themselves when they face financial toxicity as a result of illness of disability.

Tom Ema was faced with choosing either to stop treatment or leave his family with huge medical debt. He and his wife discuss how they resolved these issues.

The Fowlers adopted a child with serious medical issues and faced serious problems with their insurance coverage.

PAF case managers talk about how people can learn to access and navigate the system better when they confront medical debt or insurance issues.

 

RWJF Grantees and Partners

These are brief summaries of the eight exploratory research projects that RWJF grantees carried out.

There were two overarching goals for these projects.
Clinical Workflow: To establish best practices for how tools/resources that support cost-of-care conversations can be better embedded into clinical workflow and patient/caregiver “life flow.”

  • Kaiser Permanente Washington Health Research Institute
  • University of Southern Maine
  • University of Rochester Medical Center
  • Sinai Urban Health Institute

Vulnerable Populations: To test specific messages, best practices and other principles for improving cost conversations between clinicians and vulnerable populations.

  • Consumers Union
  • Migrant Clinicians Network
  • Center for Health Progress
  • University of Alabama Birmingham

 

Integrating Cost-of-care Resources into the Clinical Workflow
Project Orca
Kaiser Permanente-Washington Health Research Institute
University of Washington
Nora B. Henrikson, PhD, MPH
Matthew Barnegas, PhD, MPH

This two-part human centered design project was designed to document and improve clinical workflows related to cost-of-care conversations. Part one included ethnographic observations and interviews of health system staff across numerous clinical and operational departments. That information was then used to develop three patient journeys, in storyboard format, that illustrate how patients experience having their financial concerns addressed.

 

Plan-Do-Study-Act: Engaging Vulnerable Populations to Optimize Cost-of-care Conversations.
Consumers Union
Susan Perez

This study conducted eight focus groups in five communities, rural and urban, in California and New York. 57 one-on-one interviews with consumer and physicians throughout the United States and surveyed 621 providers. The goal was to identify barriers to cost-of-care conversations and provide a basis for establishing best practices to guide providers as to when and how to have these conversations and make it easy for patients to express their preference and values on these key issues.

 

Implementing a Team-Based Approach to Integrating Cost of Medication Conversations into Primary Care Practices
University of Rochester
AAFP National Research Network
Kevin Fiscella, MD, PhD

This study assessed whether a single training session would increase conversations specifically related to the cost of medication between patients and primary care providers. Most primary care providers do not routinely screen patients for concerns related to the costs of their medications and patients may be reluctant to bring up these issues. Investigators surveyed 50 patients and providers before and after the intervention, a 60-minute training session for clinicians and staff on cost of medication conversations.

 

Enhancing Cost-of-Care Conversations for Low Back Pain Treatment Using Publicly Reported Cost Information
University of Southern Maine
Kimberly Fox, MPA

The goal of this project was to use Maine’s price transparency website, CompareMaine, to help facilitate cost-of-care conversations on treating low back pain. The project was piloted in six primary care practices in two health systems and included training for practices and tailored workflows as well as consumer materials that encourage patients to ask questions about the cost of their treatments and apply this information to making treatment decisions.

 

Clear on the Cost: Optimizing Conversations between Health Center Patients and Their Providers about Cost-of-care to improve Adherence
Migrant Clinicians Network
Douglas Bradham, DrPh, MA, MPH
Deliana Garcia, MA

This study explored the current extent and content of cost-of-care conversations in four health care centers treating primarily immigrant and migrant populations in Texas, Pennsylvania and Puerto Rico. It included bilingual interviews with 85 patients as well as staff interviews and physician surveys. The research team also visited three sites for multi day observations and interviews.

 

Let’s Talk about the Cost of Cancer Care: Finding What is Understandable and Useful for Patients and Providers
University of Alabama at Birmingham
Maria Pisa. PhD

This study examined patient and provider perspectives on the essential elements of cost-of-care conversations. Investigators interviewed 42 patients being treated for breast cancer as well as 20 providers and identified three critical elements for these conversations: reassurance, action and resources.

 

Integrating a User-Centered Tool to Facilitate Cost-of-care Conversations in an OB/GYN Clinic on the Southside of Chicago
Sinai Urban Health Institute
Kim Erwin, MDes
Veronica Fitzpatrick, DrPh

The goal of this study was to facilitate cost-of-care conversations with for clinicians and patients in an OB/GYN clinic in South Chicago. The researchers sought to identify the attributes of an effective conversation and to design a tool that fits the usual care and enabled cost-of-care conversations at a time when patients are vulnerable. The study used human-centered design principles to address cost burdens that pregnant face during their pregnancy not directly related to their medical care.

 

Cost-of-care Conversations in Adams County
Optimizing Cost-of-care Conversations between Clinicians and Vulnerable Patients
Center for Health Progress
Karl Mader, MD, MPH
Joe Sammen, MPH

This group worked with community health centers serving largely uninsured, primarily Latino populations. Patients, providers and staff members participated in focus groups and card studies before and after implementing messaging related to cost-of-care. The goal was to improve these conversations using targeted messaging.

RWJF Cost-of-care Partners

American College of Physicians will assist in the dissemination of cost-of-care research findings to physicians.

America’s Essential Hospitals is focusing on its more than 325 hospitals serving vulnerable populations across the country. AES will target medical and administrative leadership to raise awareness of the importance of cost-of-care discussions and the resources available to address financial toxicity issues.

Avalere will leverage insights and outputs from the cost-of-care initiative to assure that providers feel supported by their systems to raise cost-of-care issues and connect patients with appropriate resources, to make sure that patients feel supported in raising these issues, and that policy makers are aware of the barriers to cost-of-care discussions and can take steps to address these barriers.

National Patient Advocate Foundation/Patient Advocate Foundation will focus its efforts on disseminating cost-of-care information to a broad spectrum of stakeholders, including patients, advocates, navigators and advocacy organizations as well as providers and policy makers.

Cost-of-care Practice Briefs Summaries

Avalere developed these Practice Briefs synthesizing the themes across the research of the eight RWJF grantees. Each brief deals with a critical issue related to cost-of-care conversations. The purpose of the briefs is tor provide actionable approaches to implementing cost-of-care discussions. While  these briefs draw on the work of all grantees, the primary sources are listed for each one.

I.
Why Do Cost-of-care Conversations Matter? How to Share Important the Importance of Cost-of-care Conversations within Your Organization
Primary sources: Consumers Union, Center for Health Progress

“They’ll ask me the side effects of the medicine. And I’ll say, hey the side effect of this medicine is going to be cost. I’ll even list it as a side effect…. Oh, I could go on and on. It’s a big issue.” Physician, Consumer Report study

“It’s very important that the patients be straight up about costs. It’s important that the doctor be willing to engage in something that traditionally has not been considered in the realm of the doctor.” Consumer Reports study

Key Takeaways 

  • The financial impact of health care is an important factor in making shared decisions about treatment options
  • Physicians and their health care teams should include these conversations as a standard part of their treatment discussions
  • These discussions should address both costs-of-care directly related to treatment as well as the impact of treatment costs on patient’s lives
  • These discussions often do not take more than a few minutes and can be incorporated into the clinical workflow
  • Cost-of-care discussions help build trust between physicians and patients, and ultimately improve treatment outcomes.

II.
What are the Most Common Barriers to Implementing Cost-of-care Conversations; Tips for Addressing the Frequently Asked Questions
Primary sources: All eight grantees

“I didn’t know that I could say, ‘How much does it cost to come here?’ I didn’t know physicians had anything to do with the money part of it.” Patient, Consumer Reports study

“We recognized that our patients were having cost issues, but we didn’t appreciate the scope of the challenges that patients are facing.” Primary Care Physician, University of Rochester Medical Center study

 

Key Takeaways

  • Physicians cite lack of time, resources and knowledge of patient costs as barriers to having cost-of-care conversations. They also lack tools that can be used to integrate these conversations into the clinical workflow.
  • Administrators and leadership are reluctant to add anything to clinical encounters that slows the workflow and does demonstrably contribute to improvements in either patient or business outcomes.
  • Training, tools and resources tailored to each member of the care team work best and are most easily integrated into the clinical workflow.
  • Vulnerable populations face specific challenges related to barriers about discussing money or financial concerns with their doctors or fear that inability to pay for or access care will compromise the quality of their care.
  • Programs that provide training to all staff on when and how to have cost-of-care conversations are valuable and should include data sharing, patient stories and experiences, tools that can be used in clinical encounters and ways of assessing the value of these conversations.
  • Cost-of-care conversations can be linked to other key issues, including value-based payment initiatives and revenue cycle management.
  • Conversations about cost-of-care are a team effort and all staff should receive training and be involved in talking to patients about their financial concerns.
  • Training on specific issues that affect cost-of-care discussion with vulnerable populations is critical.

III.
How to Integrate Cost-of-care Conversations into Workflow
Primary Sources: University of Rochester Medical Center, University of Southern Maine, Migrant Clinicians Network, Kaiser Permanente Washington

“I think it would be helpful if there was someone on the team,,,that could actually talk about the costs and what to expect and what people could actually do with regard to various resources that may be available for it,” Patient, University of Alabama at Birmingham study

 

Key Takeaways

  • Team-based approaches to cost-of-care conversations work best
  • Effective cost-of-care conversations require clarity in roles and responsibilities across the organization’s staff
  • Every organization should establish a process for sharing information about cost-of-care issues with staff. This can include information about which patients are at high risk and how to screen for financial concerns.
  • Cost-of-care screening and intervention should be integrated in the standard workflow
  • EHRs can be valuable tools to alert staff and trigger questions and to track and assess conversations
  • Feedback loops and check ins with staff are critical to implementing a new workflow and supporting cultural change.

IV.
What Your Patients Aren’t Telling You: How to Partner with Your Patients to Help Manage the Hidden Costs of Health Care
Primary Sources: Sinai Urban Health Institute, Center for Health Progress

“I don’t hear much about the cost of childcare, but I do have patients that you ask them why they haven’t been seen in two months and the reason is childcare,” Obstetrician/gynecologist, Sinai Urban Health Institute study

“We often find out at the next care visit that the patient didn’t pick up their meds (prescribed at the previous visit) because they cost too much.” Medical assistant, Community practice, University of Rochester Medical Center study

“I think in most places, their immigration status plays into cost. They are afraid to talk about their legal status. A lot of patients don’t fully open up to their full cost-of-care conversations because of their family status.” Provider, Center for Health Progress study

 

Key Takeaways

  • Indirect costs include costs of travel and transportation, childcare, lost job time and wages, food, parking and other out of pocket costs.
  • Patients often are forced into deciding whether to pay for their medical care or for things like groceries, rent and utility bills.
  • These costs can have an impact on any patient, but are most likely to affect lower income patients.
  • It’s important to take active steps to recognize indirect types of financial toxicity and their impact on patient lives and their treatment decision making. This means knowing which patients are at high risk, screening for both direct and indirect financial concerns, and making appropriate resources available to these patients.

V.
How to Successfully Make Cost-of-care Conversations a Normal Part of the Clinical Encounter
Primary sources: University of Rochester Medical Center, University of Southern Maine Consumers Union

“We need to systematically screen for cost issues just like providers screen for depression,” Physician, University of Rochester Medical Center study

 

Key Takeaways

  • Patients do not always feel comfortable discussing costs-of-care with their physicians.
  • Physicians and health care providers can help overcome this barrier and increase patient comfort by routinely asking patients about their financial concerns during clinical encounters
  • There are tools and tactics that can help make cost-of-care conversations a normal part of practice. These include:
    • Using standardized financial burden questions with all patients
    • Implementing universal cost-of-care conversation triggers
    • Developing materials for patients about costs-of-care and using these to discuss financial concerns during the clinical encounter

VI.
Structuring the Conversation: How to Talk to Your Patients about the Costs of Their Care
Primary sources: Kaiser Permanente Washington, University of Alabama Birmingham, Center for Health Progress

“They could come in and say, ‘you’re due for more treatments which is going to include this, this and this. We want to give you an estimate of the cost of it. If you cannot afford it, we will work something out with you to make it easier for you to pay.’ I would just like them to be honest and let me know what is facing me, what it is going to cost and how I can pay for it if I do not have the ready cash.” Breast cancer survivor, University of Alabama at Birmingham study

 

Key Takeaways

  • Different patients have different needs both in terms of their actual financial concerns and how and when these conversations occur. These needs fit three basic categories:
    • Acute financial need
    • Assistance with budget and planning
    • Need to make a clinical decision in which cost is a factor
  • A useful framework for structuring cost-of-care conversations is:
    • Reassurance–an open, empathetic, non-judgmental approach
    • Action-specific steps to address the issues
    • Resources–connect patients with the full range of available resources
  • Successful cost-of-care discussions include:
    • Compassionate messaging
    • Sensitivity to fears of receiving lesser care
    • Information on the estimated costs for the patient
    • An established rapport and personalized relationship with the patient