I was a really green 25 year old true believer and to me, Don was a wise and knowledgeable about NYC politics and health care. It was very clear to me at once that Don is an excellent listener and fully respected everyone’s point-of-view. Don defies labels, but to me, he is a blue collar Renaissance man; a progressive thinker, but not an ideologue.  In fact, the only times Don showed impatience was with ideological diatribe. Don is a pragmatic progressive thinker who makes moves directed at human betterment (particularly in health care) and cultural enrichment. He also has an astute business mind as he cut through the anomalies of asymmetrical mostly unregulated hospital reimbursement in the post Medicare era. The hospitals were totally over-matched as Don negotiated well on behalf of his clients.

In January 1972, I was honored when I was asked by Don to offer some suggestions to the formation of a “Consumer Health Information and Protection Agency.” In February 1972, this idea came to life in a proposal prepared by Don Rubin and Ed Gluckmann for the creation of the “Consumer Commission on the Accreditation of Health Services”.  CCAHS would seek to become a consumer centered counterpunch to the ineffective JCAH, and was organized as an “incentive for change in the hospital world”. CCAHS with its activist and diverse board of consumers and key opinion leaders in health policy produced quarterly and other publications that served as a laboratory of health reform ideas.

I was again honored a few years later when Don asked me to serve on the CCAHS Board and contribute to the CCAHS “Consumer Health Perspectives” publication on topics related to hospital regulation, gain sharing, home care, and others. Don was very kind. After I was terminated from my position as Director of a professional and trade association of home health agencies over different views of how the organization should be run, Don welcomed me as to use his office to serve as my base.

Over the next few years I had the opportunity to write and co-author several articles for the CCAHS “Consumer Health Perspectives” including “Home Care, Who Will Benefit: The Payor, The Provider or The Patient” with Barbara Dillon and Herb Hyman, and “Bed Reduction and Gain Sharing” which identified some health care system trade-offs that could be established in health planning and regulations that better serve population needs. I also had an opportunity to write a chapter in “Medical Technology, Health Care and the Consumer” – “Developing New Medical Technologies: Medical Technology and the Public Interest”.

In this chapter I advanced the idea that based on data assessment, some technologies should be identified for selective development where needed and, similarly, should be limited where determined to be of marginal value or potentially of negative value if misused. I identified “half-way technologies” that should not be advanced such as organ transplantation. I was very wrong and fortunately no policy makers even considered this suggestion. This was especially ironic in my case as I later served as president and CEO of the American Liver Foundation where organ transplantation was a highly effective procedure that has since saved many thousands of lives. I worked with Mickey Mantle’s family to promote organ donation. In my defense, I wrote my chapter before the development of cyclosporine, the miracle drug that prevented transplant rejection.

The point is that Don Rubin created a non-pretentious environment for health care policy wonks (before that term was used), people committed to finding ways of improving health care. Don Rubin’s CCAHS was a true incubator of ideas that worked and ideas that did not work. Working closest to Don was CCAHS EVP, Ed Gluckmann and Research Director, Shelley Frost – this trio made it work. And I remember the incredible hard work of so many – Herb Hyman, Allen Spiegel and the many consumer advocates, community and labor movement leaders who made sure that CCAHS kept its soul – Judy Wessler, Frank Goldsmith, John L.S. Holloman, M.D., Milton Terris, M.D., Florence Galkin, Peter Velez, Marshall England, et al.

Was CCAHS an idea before its time? Was Rubin a dreamer with unreal fantasies of changing JCAH and the health care system to reorient itself to “patient-centered care”?

Within the past couple of years “patient-centered care” has become a central theme to organize the health care system. It presumes active involvement of patients and their families in the design of new care models and in decision-making about individual options for treatment. Given that non-consumer stakeholders often don’t know what matters most to patients regarding their ability to get and stay well,[1] care that is truly patient-centered cannot be achieved without active patient engagement at every level of care design and implementation. The IOM (Institute of Medicine) defines patient-centered care as: Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.[2] Patient-centered care is also one of the overreaching goals of health advocacy, in addition to safer medical systems, and greater patient involvement in healthcare delivery and design.[3]

Don Berwick defined patient-centered care as: The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.[4]

In its Declaration on Patient-Centred Healthcare, The International Alliance of Patients’ Organizations (IAPO) states that the essence of patient-centered healthcare is that the healthcare system is designed and delivered to address the healthcare needs and preferences of patients so that healthcare is appropriate and cost-effective. This Declaration sets out five principles of patient-centered healthcare: respect; choice and empowerment; patient involvement in health policy; access and support and information [5].

The embrace of the patient centered care concept by healthcare leadership in clinics and the policy level reflects the Rubin/Gluckmann founding principles of CCAHS. This is good news as it appears that CCAHS thinking of 40 years ago might be coming part of the establishment in driving health care. But then again, I have always been an optimist. They say “the difference between an optimist and a pessimist is that the pessimist has better data.”!

1. Sepucha, Karen; Uzogarra, Barry, O’Connor, Mulley (2008). “Developing instruments to measure the quality of decisions: early results for a set of symptom-driven decisions”. Patient Educ Counsel. 73 (3): 504–510.
2. Institute on Medicine. “Crossing the Quality Chasm: A New Health System for the 21st Century”.
3. Jo Anne L. Earp, Elizabeth A. French, & Melissa B. Gilkey: Patient Advocacy for Health Care Quality.
4. Berwick, Don. “What Patient-Centered Should Mean: Confessions of an Extremist”. Health Affairs Web Exclusive.
5. International Alliance of Patients’ Organizations (IAPO, 2006). “Declaration on Patient-Centered Healthcare”.

An Introductory “Thank You”

There really are no words to adequately describe the commitment, dedication, knowledge and prestige the members of the Board, the PAC, Staff and volunteers made to the success of the CCAHS. So we will say nothing more but “Thank You!”

 OFFICERS  

Chair: John McDowell* (Chairman, Director for Social Welfare, National Council of Churches)

President: Donald Rubin* (President, Medical and Hospital Consultant for self-insured payers)