Untangled Health

Consumers Unite To Drive The Changes We Need

Tag: Republican Healthcare

I found my Peeps. Why I joined The Right Care Alliance

To build a new system we need the voice of millions struggling to survive as they try to understand, coordinate and afford America’s health care resources


Since becoming disabled I have dedicated my time to reforming our healthcare system. My drive emerged from my experiences  living with diabetes and other complex co-morbid conditions since 1966 coupled with my experiences working within our healthcare system for thirty-three years as a hands-on the caregiver, administrator, program leader and HIT visionary. To date: After five years of dedicated personal time I located only one organization –PCPCC that brought all of the Stakeholders together necessary to alter a system that has failed so many. My work with PCPCC brought me to Washington DC and opened other opportunities to influence legislative language, such as the variety of submissions to CMS for defining the Patient Centered Medical Homes. That said, where the work and effort was worthwhile, I have reached a personal conclusion that the American Health Care Apparatus needs to be designed and implemented from the bottom up. Without soliciting opinion, educating the people about our failure in moral values we will not realize our dream. A long-time fan of Continuous Quality Improvement in medicine I notice a missing feed-forward element in design when it comes to our national perspective: The Patient Perspective. Much is celebrated about patient-family inclusion in health care delivery design yet I fear what we celebrate is often the result of Service Excellence Performance Surveys, JCAHO and CARF reviews, NCQA Accreditation Surveys and other attempts to qualify and quantify processes that have not fulfilled  my personal criteria for “Going to the people”. If we are going to do this thing: We need to start over. The Right Care Alliance is on track and I am thrilled to assist with the integration of the proper minds and voices necessary to build a functional health care system.

Since becoming disabled in 2012 I have discovered what I consider to be a lack of attention to those consumers who are the most under-served; at times I fear a lack of respect for their capacity to contribute. My sense is that the arrays of NFP organizations working to define methods for health care reform and specify a concise mission are struggling with their identity (excluding folks like Families USA). Organizations such as The Society for Participatory Medicine actually have membership fees which prohibit some from joining in the effort. I participate in the private conversations among leaders and have brought this to their attention. They do however have a scholarship program for membership dues. Where the intent is respected this is hardly the mechanism to attract contribution from the community or patients who are actually the consumers accounting for 50%-70% of America’s health care budget.

When I analyzed the membership roster of S4PM in 2015 I found that 32% of their membership identified themselves as patients first. Confused, I brought this to their attention. One year later, many more patients emerged. These were mostly individuals who had more than 16 years of education and were actively engaged in other professional activities. We need these people, but once again they hardly represent the grass-roots of the healthcare services consumer.  Their mission is decidedly not health care reform, but focused on bringing patients and physicians together to form collaborative medical teams. We need these people in our discussion as we create our new system. However, I suggest their priority is not the same as the System Reformer for without a system that guarantees a bio-psycho-social care plan to all Americans we have failed. Other Patient-Centered Organizations such as Patient’s Like Me are providing a service and at the same time a clever disguise for a population research database that is funded largely through the Pharmaceutical Industry.  Patients like Me (I am a member)offers the opportunity to establish a virtual peer-support community and access to treatment guidelines and research. I love this system as it brings folks to my kitchen table that help me address the chronic pain I deal with each day, but at the same time I recognize we are freely giving away personal health information in exchange for the service. At the other end of the spectrum I have found Veritas Healthcare  where a small group of physicians, administrators, non-physician caregivers and patients are creating a new definition for those actively involved in saving lives from day-to-day through pushing the limits of healthcare reform in their local communities. They brand themselves Health Angels, I am a member and contribute to their initiative. We are many AND We are scattered.

Over the years I have come to fear we will miss an opportunity to establish a driving force as the most important voices in health care are lost or diluted through the diffusion of their input across an “over-abundance” of the organizations soliciting their involvement. Always anxious to help these stakeholders will easily donate a lot of their energy toward the cause “Fixing Healthcare” but once they sense they are being exploited will drop-out and assume a protective posture.

With experienced leadership, funding and most-importantly Humility I sense there is sufficient energy to establish a ‘critical mass effect on re-writing America’s plan for supporting the Health and Well Being of its citizens in future generations. That said, the barriers are many: Our present leadership in DC and a misinformed public that is being split into near civil-war we struggle to overcome the noise. So… time is of the essence and somehow, someway we need to corral these voices and experiences (hence knowledge) that is scattered throughout the internet, inner city and rural America into a single force. My prayer is that The RightCare Alliance will provide the necessary gravity to bring us together.