As a coalition, Partners for Better Care (PBC) members work to influence policy aimed at making health care more cost-efficient, transparent and fair. Our members are leaders in their field—supporting patients by serving their communities and successfully advocating on their behalf.

PBC’s members—AIDS United, Amputee Coalition, Autism Speaks, Christopher & Dana Reeve Foundation, The diaTribe Foundation, Genentech, Hemophilia Federation of America, The MAGIC Foundation, The Michael J. Fox Foundation, National Down Syndrome Society, National Multiple Sclerosis Society, National Organization for Rare Disorders, National Patient Advocate Foundation, Novo Nordisk, Obesity Action Coalition and United Cerebral Palsy—all bring to the initiative strong and effective patient advocacy leadership.

Partners for Better Care members represent millions of Americans living with debilitating diseases and conditions, as well as the families who support them. Many individuals and families coping with a chronic or life-threatening condition live paycheck to paycheck, leading them to question when their health is “bad enough” to justify the costs of treatment. The PBC members facilitate necessary advocacy for those in need based on the experiences of the communities they represent, and go a step beyond to advocate for patient-centered quality care for all. Partners for Better Care proposes solutions to improve health care access for everyone.

Click here to learn more about how your organization can become a member of Partners for Better Care.

Click here to read our 2017 Healthcare Principles.

Our Focus
Predictable, Manageable, Out-of-Pocket Costs & Limited Cost Shifting
Transparency of Cost & Quality Information
Provider Network Advocacy
Reasonable Health System Costs
Fair & Stable Formularies & Equitable Access to Therapies
Easy, Quick, Fair & Understandable Appeals Process
Reasonable Health System Costs

Patients have a stake in addressing the rise in health system costs and should be at the table when these issues and solutions to them are being discussed. Containing health care costs without jeopardizing access to care and quality of care is complex, and all stakeholders should be part of designing solutions. Pilot studies, demonstration projects and other innovations are on-going but need to be scaled up. The challenge is finding ways to lower costs, increase quality and still encourage innovation.

Easy, Quick, Fair & Understandable Appeals Process

Ensuring patients and their providers have an opportunity to appeal a coverage decision by a health plan is important to ensure optimal care. In the past, patients were left with few options when insurers denied coverage or restricted treatment. Today, patients have the right to file an appeal, first to the insurance company (“internal appeal”), and if not satisfied with the decision, they are guaranteed the right to appeal decisions to an independent third party (“outside review”).

While the Affordable Care Act vastly improved patient protections and the right to appeal, the appeals process remains challenging, complex and burdensome for patients and their providers. Individuals are required to research, justify and document medical necessity and evidence of effectiveness. In order to ensure patients and providers are able to easily file appeals in a timely manner, health plans should provide easily accessible, up-to-date information about appeals, including standardized documentation and information about decision-making protocols that may impact the care patients receive.

Fair & Stable Formularies & Equitable Access to Therapies

We believe patients should have access to adequate formularies that do not discriminate against any medical conditions and ensure patients have affordable access to prescription drugs, devices, and other therapies. Tiering and pre-authorization limitations are becoming more common in formularies, and problems persist with access to devices and allied health professionals such as physical therapists.

Health insurance plans may have websites where patients can search for a plan’s prescription formulary, understand what tier specific drugs are on, and what restrictions apply. However, formularies can change after the enrollment period and exclusions, tiering and consumer costs could vary throughout the year. Clear, accurate and up-to-date information should be required, as well as fair and stable formularies that do not change within the plan year and do not limit patient or provider access to needed prescriptions.

Provider Network Advocacy

A provider network is a group of health care providers — primary care providers, specialists, allied health professionals, hospitals and other related services contracted with a health plan to provide adequate care to its enrollees at negotiated rates.  Network adequacy requires that comprehensive health care services are provided in sufficient quantity and quality to serve the population of insured individuals. However, it is important to recognize that provider networks are a critical way health plans manage both the quality of the providers their patients are seeing as well as costs. It is essential to maintain a balance between access to varying types of providers, while still allowing health plans to design lower cost products to best meet the needs of patients.

Plans are required to post information about which providers are in-network and which providers are accepting new patients. But this information is sometimes difficult to access and may be out of date.

Full and current information regarding in-network capacity is critical. Significant challenges have occurred when providers and specialists listed as in-network are no longer seeing new patients, or when available in-network specialists are at significant distance from insured patients, requiring long travel times that limit access.

Other challenges may occur within a hospital or healthcare system when not all specialists are contracted with the same insurer as part of a provider network, even within the same institution. Patients enter a hospital, choosing it as “in-network” only to discover after discharge they have an unmanageable and unpredictable bill, because one of their specialists was not in network.

Transparency of Cost & Quality Information

Transparency means consumer-friendly, easily understandable and readily accessible information that is complete and up to date. Consumers should be able to understand their treatment options, receive full information on discharge and outcomes data, quality metrics, and cost of the providers that they are seeing prior to receiving care. By giving patients access to this valuable information, we believe consumers will make better decisions about their care and will be able to more adequately manage their health care costs. In a recent Kaiser Family Foundation poll , roughly 7 in 10 patients say they would use information on network adequacy, out-of-network costs, claim denial and appeals, and costs for services when shopping for a health insurance plan.

A report from Castlight found massive disparities in the cost of doctor visits, procedures, and tests—both within the same metro areas and nationwide. Costs vary so widely because there are no uniform standards in the health care system, as insurers and providers negotiate independently for each of the insurer’s networks.

Predictable, Manageable, Out-of-Pocket Costs & Limited Cost Shifting

Health care costs have continued to rise, resulting in consumers having to pay significantly more out-of-pocket for their health care. Consumers have seen these out-of-pocket costs increase in the form of premiums, deductibles and cost-sharing for most health care services. These varying out-of-pocket costs, combined with a lack of information about costs and what contributes to them, create a situation of unpredictable and unmanageable costs, which negatively impact both consumers ability to access needed care and their health care outcomes.

Rising costs across all health care sectors are driving cost shifting. The drivers of the persistent rise in health care costs are varied and interconnected and include factors related to in-patient and out-patient costs.

A 2014 Gallup poll showed that 1 in 3 Americans have put off some kind of medical treatment for themselves or members of their families due to cost and that more put off treatment for serious conditions than non-serious conditions. The strategy of shifting costs to patients and beneficiaries is not sustainable and must be limited.

A recent study by the Commonwealth Fund found that as many as thirty-one million people with health care coverage in the United States were underinsured in 2014. The study also found that:

  • Half (51%) of those who were underinsured had problems paying medical bills or were paying off medical debt over time.
  • In 2014, 14 million people had deductibles that were 5 percent or more of their income, while only 4 million had deductibles that high in 2003.
  • 44 percent of respondents either didn’t go to the doctor when they were sick; did not fill a prescription; skipped a physician-recommended medical test or follow-up visit; or didn’t see a specialist when their doctor told them to do so.

  • Predictable, manageable out-of-pocket costs, and limited cost shifting
  • Transparency of cost and quality information
  • Provider network adequacy
  • Reasonable health system costs
  • Fair and stable formularies and equitable access to therapies
  • Easy, quick, fair, and understandable appeals processes

Our focus is based on research, including extensive interviews with patients and consumers. This research coupled with membership expertise and input is the foundation for our work; a foundation that will guide the development of all aspects of the Partners for Better Care coalition work. Our research and partners have defined a core set of principles to be reflected in a new, nonpartisan Patient Charter. This Patient Charter was collaboratively developed to reflect the focus outlined above and will ultimately serve as a broad roadmap for the next generation of health care. Key to this patient-centered focus is the belief that patients have the right to dignified, culturally competent quality health care.

About Us

We are a partnership leg by patient and disease advocacy groups advocating for the next generation of
healthcare. Our members are patient advocacy organizations and a diverse group of healthcare stakeholders, including industry and payers, who are working together with policymakers to develop the best solutions to today’s healthcare challenges. Partners represents more than 100 million patients living with a wide range of chronic and acute conditions, and we believe that Americans should have access to the necessary care to improve their health and the health of their families.

Partners for Better Care has worked together to establish a core set of principles contained in a new, nonpartisan Patient Charter. Together, we will rally around this Charter as a broad roadmap for the next generation of health care, and we will start a national conversation backed by millions of patients and the most relevant players.

With the strong backbone of our nonpartisan Patient Charter, Partners’ members developed 2017 health care principles. As experts on patient-centered care, Partners and its members are proud to serve as a resource to policymakers and thought leaders. We remain committed to working with Congress, the Administration and other healthcare stakeholders to  support policies that advance patient-centered quality health care for all Americans.

High-quality medical care is available in the United States, but many Americans are unable to access the care they need. Access to affordable, patient-centered care and innovations—including coverage of preventive services, tools for management of chronic conditions, coordinated care management and specialist care, innovative therapies and technologies and treatments for any medical condition or emergency—is critical. Although more Americans than ever before now have health care coverage, out-of-pocket costs, including deductibles and cost-sharing for medical services, are escalating at substantially disproportionate rates compared to the wages of the average American. Additionally, complicated benefit designs such as prescription tiering and narrow physician networks are making it increasingly difficult to access quality care, and increasingly essential for patients to understand how to purchase coverage.

Based on extensive opinion research and policy analysis, the priority policy issues for Partners for Better Care can be categorized into six areas of focus. Our priority issues, all of which must be culturally competent, include:

  • Predictable, manageable out-of-pocket costs, and limited cost shifting
  • Transparency of cost and quality information
  • Provider network adequacy
  • Reasonable health system costs
  • Fair and stable formularies and equitable access to therapies
  • Easy, quick, fair, and understandable appeals processes

Aimed at tackling these issue areas comprehensively, Partners for Better Care helps patients and their allies by advocating for the next generation of health care based on key principles of patient-centered quality care, availability, transparency and affordability. And we hope you will join us.

Patient Charter
  1. Patients will have an active and formal voice in health system transformation including payment and delivery system reform; Systemic efforts to contain costs, assess the value of care and treatment, and generate the best outcomes at a reasonable cost should be patient-centered.
  2. Patients have the right to dignified, culturally competent quality health care.
  3. Patients will have limited cost sharing and will have predictable and affordable total out-of-pocket costs, including deductibles, co-pays, co-insurance, premium costs or contributions to premiums across care settings.
  4. Patients will have easily understood and accessible up to date information about covered services, providers, formularies and out-of-pocket costs in all insurance plans during enrollment periods and throughout the year.
  5. Patients will have reasonable and timely access to all necessary providers in their network and network providers will be within a reasonable distance.
  6. Patients will pay in-network rates with payments credited to out-of pocket limits for all services provided at in-network settings.
  7. Patients will have access to necessary medications, services, devices, and other care without discrimination through unreasonable tiering or excessive cost-sharing.
  8. Patients will not be subject to cumbersome preauthorization and renewal processes that restrict access to care and therapies — including prescriptions and devices.
  9. Patients will have easily understood and accessible up to date information and guidance regarding appeals, including timely access to a rapid and fair appeals process.

Click here to read our Health Care Principles, which guide our efforts regarding health reform.

Analysis: Court Decision to Invalidate the Affordable Care Act Would Affect Every American | Dec 17, 2018

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Statement on “Short Term Plans” Rule | Aug 2, 2018

Partners for Better Care, a partnership of patient advocacy organizations and a diverse group of healthcare stakeholders, is disappointed that [Click to read more]

Partners Applauds Administration Support for Risk Adjustment Program | Aug 2, 2018

Partners for Better Care applauds the Department of Health and Human Services and Centers for Medicare and Medicaid Services for [Click to read more]

Partners Supports Health Care Outreach and Navigator Funding | Aug 2, 2018

Partners for Better Care, a coalition led by patients and their allies advocating for the next generation of healthcare, urges [Click to read more]

Statement on Protections for Individuals with Pre-existing Conditions | Jun 12, 2018

Partners for Better Care stands firmly with its members and patients across the country in urging the Administration to defend [Click to read more]

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Recognizing that there is strength in numbers, members will benefit from increased organizational bandwidth, dedicated staff and capacity through the partnership’s communication, advocacy and research activities while promoting a holistic approach to member-defined pressing health care issues and challenges. Partners for Better Care will also raise member profiles by putting them in the public eye, increasing their visibility and becoming part of a national voice focused on media, policymakers, regulators and presidential candidates.

To transform the U.S. health system, we must involve all relevant industry leaders in the conversation. We are actively seeking membership from insurers, hospital systems, and provider groups that believe multi-stakeholder cooperation is the answer to achieving optimum patient care. Click here for more information about how we view the role of industry along side our Patient Charter.

If you’re interested in becoming an industry leader or an advocacy partner in our coalition, please fill out the contact form below and a team member will reach out with additional information.