Immortal Bird Postscript

Doron Weber on Immortal Bird Aftermath

Immortal Bird Speaks for Patient Voice at Federal “Partnership for Patients” Meeting

Yesterday, I was the featured guest speaker, via webinar link, at a Washington DC meeting of the federal partners in the Partnership for Patients (PfP) initiative. My task was to tell representatives of about a dozen federal agencies–from the CDC, FDA, NIH and CMS to the DoD and VA–about my experience as related in Immortal Bird and to discuss my advocacy work since then on behalf of patients. I was also there to remind them why their work is so important and to bring a personal story into the bureaucratic mix.

The PfP is a public-private partnership dedicated to improving the quality, safety and affordability of health care for all Americans. It includes physicians, nurses, hospitals, employers, patients and their advocates, and the federal and State governments. The Partnership’s measureable objectives include reducing hospital acquired conditions by 40% and hospital readmissions by 20% (40/20).

Begun in 2010 and slated to end in 2013, this ambitious, 3-year program aims to:
• Make Care Safer so that there are 1.8 million fewer injuries and 60,000 lives saved
• Improve Care Transitions so that preventable complications during a transition from one care setting to another are decreased resulting in 20% fewer hospital readmissions and 1.6 million patients who recover without readmission

The three key components of the PfP are
a) 26 hospital engagement networks across the country which include 3700 participating hospitals
b) 82 sites in the Community-Based Care Transitions Program that include community-based organizations such as social service providers or Area Agencies on Aging, multiple hospital partners, nursing homes, home health agencies, pharmacies, primary care practices, and other types of health and social service providers serving patients in that community
c)The Patient and Family Engagement Network to share information and catalyze action among existing patient and family engagement leaders, especially at the community level.

Patient and Family Engagement is where I and my experience as the author of Immortal Bird comes in.
The PfP people heard my talk at Chautauqua this summer about the importance of “the patient voice” in the health care debate and invited me to join their efforts, which appear closely aligned with my own. The PfP mission statement reads:

“Patients, families and caregivers are essential partners in efforts to improve the quality and safety of the care they receive, including being active members of their own health care team; advocating for improved safety where they receive care; and helping to set the health care priorities in their communities. Patients and families have an important role to play in ensuring the patient perspective is part of every Partnership for Patients activity and must be supported in taking action with patient and family engagement best practices and tools.”

The meeting yesterday was intended to give the federal partners an open and collaborative forum for discussing and reporting their activities, especially how they are progressing towards the 40/20 targets and how PFP team can support them related to the PFP aims. The federal agencies represented at this meeting included

a)Center for Medicaid and Medicare Services (CMS), which has the operational lead
b)Agency for Healthcare and Research Quality (AHRQ)
c)Administration for Community Living (ACL)
d)Centers for Disease Control and Prevention (CDC)
e)Health Resources and Services Administration (HRSA)
f)Office of the National Coordinator for Health IT (ONC)
g)Indian Health Service (IHS)
h)Food and Drug Administration (FDA)
I)National Institutes of Health (NIH)
j)Occupational Safety and Health Administration (OSHA)
k)Substance Abuse and Mental Health Administration (SAMHA)
l)US Office of Personnel Management (OPM)
m)US Department of Defense (DOD)
n)US Department of Veterans Affairs (VA)

My role was to tell them about Damon’s story and how the health care system failed him, as a reminder of how urgent their work is. It easy to lose sight of the critical nature of such efforts–to save human lives that are lost due to preventable errors and remediable practices–just as it is easy to lose sight of the patient voice, and the centrality of the patient, in the health care debate. I discussed the diagnostic error–treating infection as rejection despite all signs and symptoms to the contrary–that led to my son’s death. And I listed some of problems our family encountered including lack of continuity of care, too little direct observation of the patient and the difficulty of getting good information, especially comparative outcome data. I also talked about my lobbying on behalf of the Adult Congenital Heart Association and Mended Little Hearts for more federal funding for research and data collection for Congenital Heart Disease and about the continuing impact of Immortal Bird on the medical profession, from its endorsement in Congenital Cardiology Today as must-reading for all pediatric cardiologists and cardiac surgeons to its adoption and use by universities and university medical centers.

It was a productive session and a positive experience and it also gave some of the federal partners a chance to speak in their own personal voice and to share similar family experiences. Our current error-riddled medical system is an equal opportunity destroyer and does not discriminate based on one’s place in the hierarchy or on one’s race, ethnicity or gender or whether one favors red or blue or works at the city, state or federal level.
A shout-out from me to these dedicated federal workers and this worthy nationwide undertaking to improve care and save lives.


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4 thoughts on “Immortal Bird Speaks for Patient Voice at Federal “Partnership for Patients” Meeting

  1. Wonderful post. Thanks Doron for your passion and continued efforts in improving our current healthcare culture. The recent CNN story on Morgan Stanely, again, has me thinking if you and your family. I’d love to chat more regarding your efforts at your convenience, as I’m working closely with the National Pediatric Congenital Quality Improvement Collaborative, as a parent leader. There’s a lot of ground to cover and minds to open. Movement is happening…

  2. A friend directed me to your blog and I plan to purchase your book, Immortal Bird. I’m not sure if you recently saw on the news about a mother and father taking action against NY presbyterian hospital for denying their son a transplant, but that’s me. I’m his mother. I’ve only read just briefly about your son and them not taking responsibility is something they seem to struggle with. I felt my blood boil a little as I read that sentence in your post. I , too, plan to file a lawsuit against them. I’m so sorry what your family has endured and look forward to reading your book.
    Autumn Chenkus

  3. Hello. If you have a moment and don’t mind might you email me back please? My son has a cardiology appt. on February 7th and while I have read your book and have it here at home, I wanted to ask some very specific questions about growth curve decline and when you started noticing a significant size difference between siblings. He is enrolled in the single ventricle survivor-ship program at CHOP and received a really good prognosis in August, but lately patterns and symptoms are emerging that give me pause. His protein levels for the past four years have been North of the borderline, but more Costa Rica North than Canada North. He’s will be both eleven years old and eight years post Fontan this April.

    Each of these factors could be explained away with an alternate reason, but it’s the volume of these changes rather than their severity that has caught my attention. It would be extremely helpful if I could touch base with you before we go in for labs/echo/ekg/etc on the 7th. Of course I’ve already emailed his cardiologist in our home state who stays in touch with CHOP. Thanks much for any insights you might offer.


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Doron Weber on Immortal Bird Aftermath

Doron Weber on Immortal Bird Aftermath

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