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Patient Congress 2019: Cost of Care

Using Stories and Advocacy to Advance Awareness about Health Care Costs

20th Annual Patient Congress:

The Cost of Care

September 25 – 27, 2019

Washington DC

If you have any additional questions, please contact

We recently celebrated our 20th anniversary of this event, by talking about perhaps the most critical topic in health care today: the cost of care.

What do we mean when we talk about the cost of care? For many, cost is a financial issue. What does our health care cost, how do we pay for it and how can we get our providers to listen to our concerns and incorporate them into our treatment plan?

For others, cost is more about the way we lead our lives. Does our care cost us our ability to live the life we want, either because of mobility, pain or other issues? And once again, how can we get our providers and caregivers to take these concerns seriously and address them in a thoughtful, systemic way?

This year at Patient Congress, participants will address the cost of care through three lenses:

  • Personal: how can I address my concerns?
  • Community: how can I help my friends and immediate community?
  • Systemic: what improvements can be made at the systemic level?

Questions about Patient Congress? Watch the webinar here.


Wednesday, September 25

Welcome and Opening Patient Story

NPAF staff will outline the goals for Patient Congress and answer any preliminary questions. Then, participants will hear from an outstanding patient speaker whose experience will illuminate our goals for the upcoming three-day event.

Skill-building with Patient Advocate Foundation Case Managers

Case managers will discuss tips and tools to help patients, caregivers and their families navigate medical billing issues and other access barriers. Participants will also learn about resources offered by Patient Advocate Foundation and will have the opportunity to discuss how to share these resources with their communities.

Can We Talk About the Cost of Care

Attendees will learn about the importance of having conversations about financial, social and emotional costs via a facilitated panel discussion. Audience members will build the skills to assist patient, caregivers and providers in facilitating these important discussions and what advocates can do to start motivating their communities to have conversations about costs.

Policy Solutions to Patients’ Out-of-Pocket Costs

NPAF staff will discuss proposed legislation related to health care costs.

Thursday, September 26


Selected participants will share their stories related to the cost of care. The Story Slam will take place in the Capitol Visitors’ Center in the United States Capitol.

Annual Advocacy Dinner with Guest Keynote

Participants will join NPAF and PAF staff in celebrating the advocacy of our volunteers and honor one volunteer with outstanding contributions to the important work of patient advocacy.

Friday, September 27

National Patient Advocate Foundation Volunteer Opportunities

NPAF staff will present different volunteer opportunities for existing- and potential- grassroots volunteers and ambassadors.

Brainstorming Your Community Initiative

As discussed in the application, each participant will complete a final project within their own community that furthers the work done at Patient Congress.


Participation in the StorySlam is optional.

StorySlam participants will tell a short, five minute (or less) story relating to the cost of care. The event will take place at the Congressional Visitors Center in the US Capitol and will be open to the public.

All StorySlam participants will receive a staff mentor and will be partnered with another participant with whom they can practice their story in the time leading up to Patient Congress.

For examples, please visit our StorySlam page.