End Well Industry Leader Q&A on improving advanced illness care in a fragmented system with…

As a part of our interview series with industry leaders, End Well spoke with C-TAC, the Coalition to Transform Advance Care’s Co-Chair, Bill Novelli

C-TAC Co-Chair, Bill Novelli / image courtesy of C-TAC

Bill Novelli is a professor in the McDonough School of Business at Georgetown
University where he teaches in the MBA program as well as founded and oversees Georgetown Business for Impact. He is also Co-Chair of C-TAC, a national alliance to reform advanced illness and end of life care in the U.S. Previously, he was CEO of AARP, founder, and president of the Campaign for Tobacco-Free Kids, EVP of CARE and president of Porter Novelli, the global public relations agency. He began his career at Unilever and also was Director of Advertising & Creative Services at the Peace Corps. Bill holds a B.A. and M.A. from the University of Pennsylvania.

How is your organization innovating in the field of serious illness care and the end-of-life experience?

C-TAC’s innovation lies in two primary areas: serving as a national catalyst and voice for advanced illness and end of life care (no other organization fills this need) and providing support and information for those on the ground and in the trenches rather than attempting to fill these direct roles ourselves.

What are your top priorities in this work?

There are four:

  1. Engaging the public (patients, families, caregivers) to understand the issues and make good value decisions about their circumstances;
  2. Supporting and informing clinicians to involve patients and surrogates in treatment decisions;
  3. Promoting best practice clinical and community models;
  4. Policy advocacy to create broad normative changes and system changes.

How are you incorporating human-centered design into your product/service development?

We strive to conduct research with our partners to involve the human perspective in all our strategies and our work; to learn from others about being patient -and caregiver-centric in all we do; and to be aware and learn from community implementation (e.g. our work with the faith communities).

Why did you choose to transform serious illness and the end-of-life experience as a priority for you and your organization?

The aging of the American population combined with inadequate advanced illness and end of life care make this issue one of the most important in the nation. C-TAC was created to address this as a top priority to be addressed.

Meeting stock image

What has been most surprising so far and where have you found unexpected challenges in your work with C-TAC?

Not much has surprised us, actually. We expected the challenges we have experienced from government, health systems, fragmented approaches and other impediments. Probably the most unexpected challenge has been the lack of resources to fund our work. We have a good sense of direction, but remain under-resourced, considering the magnitude of the work to be accomplished.

If you could wave a magic wand, what would appear?

Honestly, an additional ten million dollars a year for the work at hand and a more aware and sympathetic federal government to tackle these issues.

In your organization’s long-range planning — say 10 years out, what does caregiving, serious illness care and the end-of-life experience look and feel like to a consumer and their circle of caregivers?

In ten years, we expect to see a much-improved environment due to the aging of the baby boomers and the work of many organizations now underway for better quality care, improved patient and family satisfaction. As a result, we expect improved cost controls.

As a leader in the healthcare industry, can you share the top changes that need to be prioritized to improve the overall U.S. healthcare system?

  1. The public’s understanding of individual rights and what is realistic in advanced illness and end of life care.
  2. Clinicians to communicate better and to engage patients and families in treatment decisions. This isn’t as easy as it sounds.
  3. Elected officials to come together and pass needed legislation to improve training, home care, health workforce issues and public education, among other things. This is not a partisan issue.

In Congress, in discussions with policymakers, we encourage them to talk about their own family experiences. Everyone has a personal story.

What is your favorite quote, book, podcast, or resource that’s inspiring you today?

Atul Gawande’s Being Mortal, of course. Beyond that, just reading C-TAC’s on-line media compilation every day gives me ammunition and inspiration for the job.

How can our readers follow you on social media?

On Twitter: https://twitter.com/CTACorg
OR through our website: https://www.thectac.org

Any final thoughts you’d like to share?

C-TAC’s annual National Forum is happening next month in October in Minneapolis. We want professionals and warriors in this field from all over the country to attend to inspire each other to continue the work. Join us!

Meet up Thursday, October 10th at C-TAC with End Well’s Shoshana Ungerleider where she alongside Shoshana Berger and Torrie Fields will facilitate how to use design thinking to solve America’s most pressing serious illness and end of life challenges.

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