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Patient Congress 2019: Cost of Care

Using Stories and Advocacy to Advance Awareness about Health Care Costs

Applications are now open and due on June 28th! The link is below.

20th Annual Patient Congress:

The Cost of Care

September 25 – 27, 2019

Washington DC

Apply Today!

The draft agenda and a description of the Community Initiative project and Story Slam are listed below. Please check back for updates.

If you have any additional questions, please contact

We are very excited about the upcoming Patient Congress. Not only will we be celebrating the 20th anniversary of this event, but we will be 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?

Apply here!

Questions about Patient Congress or the application? 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. Participants will learn what these bills cover (and what they don’t) while also discussing how to prioritize patients’ needs when speaking with lawmakers.

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. The Story Slam will be open to media and other guests.

Legislative Meetings

Participants will meet with their legislators to discuss issues surrounding cost of care.

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. During this session, participants will have the opportunity to discuss their ideas with fellow attendees, receive NPAF and PAF staff feedback and partner with other local and regional volunteers.


Community Initiative

All participants are required to propose a project they will complete after Patient Congress. This project will be a community-based initiative designed to help others on the individual, community or systemic level and will relate to the cost of care.

Examples of proposed projects include:

  • Leading an informational session about available financial aid resources for patients
  • Conducting a letter-to-the-editor campaign
  • Writing an opinion piece for publication
  • Organizing a local or state advocacy day
  • Supporting NPAF staff in organizing a Can We Talk community education event

Projects should be of minimal cost to the participants and should incorporate the principles discussed during Patient Congress.

Participants will have the opportunity to partner with each other and to receive guidance from NPAF staff.



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.