Policy & Regulation News

Why Patient Advocacy is the New Future of Healthcare Reform

By Jacqueline DiChiara

- There is power in numbers, especially when it comes to healthcare reform.

Partners for Better Care coalition patient advocacy

A group of 9 major patient advocacy groups – AIDS United, American Liver Foundation, Amputee Coalition, the Christopher & Dana Reeve Foundation, Hemophilia Federation of America, The MAGIC Foundation, National MS Society, Parkinson’s Action Network, and United Cerebral Palsy – recently announced a collaboration to form the Partners for Better Care (PBC) coalition.

As the very first establishment of a patient-oriented advocacy group since the enactment of the Affordable Care Act (ACA), PBC’s 9 groups represent over 10 million patients from leading disease-related organizations to collectively achieve “fair, affordable and equitable health care reform.”

To better understand PBC’s leading objectives, challenges, and opportunities, RevCycleIntelligence.com chatted with Mary Richards, PBC’s Executive Director, in an exclusive interview.

RevCycleIntelligence.com: How are you specifically working to improve the availability, transparency, and affordability of healthcare for all?

Mary Richards: The Partners for Medicare, one of our first efforts, will be put together by what we call a patient charger. The framework outlines the categorical areas of our work but the patient charter itself will be released in the upcoming months.

That charter will be a broad roadmap for what's needed next. What is the next generation of healthcare reform? What do patients truly need to have access to quality, available care so they understand the care they have and need?

RevCycleIntelligence.com: What issues are you most focused on tackling?

MR: We’re looking at an intentionally broad array of issues. Each one of our members is both a leader in their field and very capable of creating action-oriented change for their population.

There are lots of stakeholders we hear from frequently – providers and hospitals, insurance companies and drug companies, device manufacturers, and allied health professionals.

With all of this discussion around patient centered-care, we believe strongly the patient voice needs to be as ubiquitous as all other stakeholders. We need to be at every table as we discuss both challenges and solutions.

RevCycleIntelligence.com: When patients skip care, how does that affect the overall cost of healthcare?

MR: About 20 million Americans had a medical problem last year and did not go to the doctor. 18 million did not fill a prescription. 20 million skipped a treatment, a follow-up, or a diagnostic test. 12 million did not see a referred specialist. And 12 million stayed overnight in the hospital or had to visit the emergency room because of access problems [The Commonwealth Fund, January 2015]. 

We seek the answer. Some organizations out there are doing a really good job trying to track and account for those overall costs. I appreciate the vantage point of CEOs and others who are responsible components of the healthcare ecosystem.

40 percent of people with Alzheimer's disease don't ever get a diagnosis. What happens if Dad doesn't have a diagnosis of Alzheimer's disease but in fact does have Alzheimer's? What happens to his job? Or if Mom is the family check writer, what happens with the mortgage? What happens when decisions are made while someone has a neurodegenerative disease but doesn’t know it?

RevCycleIntelligence.com: What are you focusing on when it comes to cost shifting?

MR: We are looking at transparency of cost and quality information, whether it's understanding the diagnosis you have, understanding care options, the outcomes of care choices, and transparency of cost understanding.

It's only with both transparency of cost and outcome information where people can make the wisest choices. Those things are unfortunately difficult to come by in our system right now.

Provider network adequacy is a huge issue for advocates and patients. Discussions are going on around Washington about reasonable healthcare costs and how the healthcare system can be both responsive and stable.

RevCycleIntelligence.com: What is the significance of a patient advocacy led organization?

MR: Patient advocacy organizations will drive our agenda. As we look at value in healthcare, one of the big questions for people with chronic conditions is quality of life.

There are interesting pilot projects right now in terms of how to design care that meets the needs of people with chronic conditions. As those models are explored and tweaked and input has been provided, things can be scaled up.

If you can keep someone healthy longer and allow them to maintain their presence in the workforce and in their home and be able to interact with family and community, there's an economy around each one of us being an able body to the best of our abilities. I'm not sure how we are quantifying those, but those are on the minds of individual patients and their families.

RevCycleIntelligence.com: What are your goals as other stakeholders hopefully begin to come on board? Do you think 2016 is an important year?

MR: As we seek to be at the table representing our expert vantage point as patient advocacy organizations, we also seek to work with other stakeholders.

We will be developing a patient charter to be released in coming months. Then we want to work with other stakeholders, to understand and come together regarding the full depth and breadth of challenges in the healthcare system.

It's important, whether for industry stakeholders, not-for-profit stakeholders, or government stakeholders, to know we each have a role to play and an expert perspective. We all have to be working in conjunction with one another to provide meaningful solutions.

Quality care is available in the United States. It's just not always available to everyone. We are getting to a place where patient-centered quality care ought to be the standard.

We feel very strongly that 2016 is an important year. The advocacy organizations who have remained focused working on these individual issues are seeing how interconnected they are. We're ready to be full participants in the discussion and the dialogues coming to solutions.