This listserv exchange between new Society for Participatory Medicine members is a nice example of how “newbie” e-patients often come to us with decades of experience and well-honed (and well-blogged) philosophies of what healthcare should be and can be.

 
From: Danny van Leeuwen
Subject: Re: Greetings from a new member

As a newbie to the Society, let me introduce myself. I work for Boston Children’s Hospital as Senior Project Manager for the Patient Family Experience. Quite a handle! My 40-year career across the continuum of care includes serving as a staff nurse, clinical and informatics manager, QI director, consultant, author, researcher, and project manager in acute, emergency, and intensive care, as well as in home care, pediatrics, behavioral health, and informatics. My mission driven, integrating approach utilizes expertise in performance improvement, team building, networking and collaboration; information systems and mobile health; consumer involvement, and of course, common sense.

My mission is to increase the sense of balance that patients, caregivers, and clinicians feel as they journey together towards best health. I am a student of both individual and organizational health as one often depends on the other. I believe that the experience of individual health is personal and unique, encompassing spiritual, mental, and physical components in the context of relationships and the environment. The experience of organizational health similarly encompasses mission, leadership, and system components in the context of culture and community.

I am in awe of both the simplicity and complexity of attaining best health and delight in the discovery of those magic levers that impact best health. Regularly adjusting the lens through which I view best health increases my likelihood of discovery. Consciousness of the many hats I wear in my health journey increases my ability to adjust the lens. My hats include patient (multiple sclerosis), consumer, caregiver, nurse, leader, musician, minister, and family man.

I blog regularly about best health. Please see my blog, Health Hats: discovering the magic levers of best health

Danny van Leeuwen, Opa, RN, MPH, CPHQ
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From: Susan Woods
Subject: Re: Greetings from a new member

Hi Danny. SPM is stronger with you in it!

Nice blog! Love the post “Rest, another magic lever”. I see a “Found on the Net” posting:
http://www.health-hats.com/rest-another-magic-lever/

Sue

Susan Woods, MD, MPH
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From: Jeffrey Harris
Subject: Re: Greetings from a new member

Danny and others,

I too am new to SPM. I have been following closely and wanted to be cautious, as energy is limited and I only want to belong to organizations where I can contribute some value. In reading the intro from Danny van Leeuwen, I realized that I had certainly fallen in the right basket of apples for once in my life.

My career spans 33 years, beginning in 1979 as a Respiratory Therapist and Cardiovascular Technologist, followed by a cosmic drift that was unintentional. Health care administration, home health, program manager for post-acute pulmonary rehabilitation, Medicaid care management, clinical informatics inventor, speaker and consultant.

But always a patient … diabetes for 46 years, hepatitis C, spinal stenosis, and now neuropathy with regional chronic pain syndrome taking me to another stage of my life where — at age 56 — I find myself applying for SSDI.

My consulting business is Untangled Healthcare LLC. Where it has been a provider- and institution-centric business, I am now realigning the content toward consumer education and self-advocacy.

To stay focused and on target, my intention is to join the collaborative that is forming as, I believe, the combined energies of patients, providers, and policy makers will create the change we need. Having lived through the decades of failed US health reform — presenting lectures in 1987 that predicted $1 trillion in healthcare expense by the year 2000 and looking back on my experiences of human failure — I have come to believe that our problem is buried deep in our nation’s humanitarian philosophy. So I call that out for all to examine. At the root of our being … do we agree that all persons should have access to care and be empowered to care for themselves?

The reason I have had diabetes for 46 years with so few complications arises from a three-decade median A1c of 7%. I achieved this through technology, wonderful physician-friends, stubborn behavior, and a willingness to confront my payer to have my home BG equipment covered at a time before there were guidelines for reimbursement.

Lastly: In the fall of 2010 I stood next to a man in a public gathering. As we told our stories he said; “You have diabetes too?” Then he informed me of his forthcoming trans-metatarsal amputation as he leaned into his cane. “All of us in my family lose our feet,” he said. “We just figure that’s what happens.” The man had not connected with a family physician since he was a child. The county he lives in has a population earning a median salary of $14,000 per year and only 68% graduate high school.

This is not acceptable.

Here to serve … I look forward to meeting you all.

Jeffrey

Jeffrey Halbstein-Harris
Untangled Healthcare
Assisting communities to monitor and improve healthcare

“Go to the people, live with them, learn from them….
Start with what they know, build with what they have….”
— Lao Tzu