This is a very difficult decision for me. I have not joined in the large group of friends, peers, and mentors in the health and tech world endorsing the draft of Health Data Rights as they currently exist.

Here’s the current draft: http://www.healthdatarights.org/home

Why not? It’s not a difficult question to answer, but the answer is difficult to share openly.

This is my patienthood we’re talking about here. That has been, historically, a huge compositional element of my personhood in total.

I can’t take this one lightly and start throwing smoke bombs at store windows without thinking it through very carefully.

When I saw the first draft, I immediately began looking at other Bills of Rights, including the US Constitution.

I thought about what Bills of Rights are supposed to do, and what I’d like a Bill of Health Data Rights to accomplish.

Do I think this Bill accomplishes what I’d like to see a revolutionary piece of rousing advocacy achieve? No.

Is it an excellent start? Yes.

Will I sign it as is? No.

Will I support the ongoing initiative with every fiber and dollar I can give? Yes.

Because this bill, and our choice and control over our personal health information, as well as establishing a view from within the system that acknowledges that choice and control, absolutely needs to evolve from this early composition.

I am stepping out on a huge, bowing limb here, fully expecting it to break under the weight of my unreasonably high expectations.

That being said, if I can’t have high expectations about a Bill that is supposed to support my right to my health information, what the hell good are ascribing to principles of any kind?

Again. This is my patienthood we’re talking about here. That has been, historically, a huge compositional element of my personhood in total.

I have not endorsed the first draft of Health Data Rights, despite spending significant time with several composers whom I love and respect and utterly believe have people-who-are-patients best interests at heart.

I must apologize now for the criticisms I am about to offer, which I also offered several times before the bill was made public.

I know many of you who worked tirelessly on this – putting in weekend hours and pooling political, personal, and professional capital to get this done.

I realize I am jeopardizing political, personal, and professional capital by NOT endorsing this draft.

I recognize and applaud your efforts at this early stage. However…

While I wholeheartedly support this initiative, I cannot in good conscience endorse this product.

I feel the results of the first round are problematic for several reasons, namely:

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Every ailment stems from improper aliment.
– Frederick Kaufman, “Love Yourself Thin”, Harper’s Magazine, January 2000

With all the chatter on the social media airwaves (Twitter, the blogosphere) surrounding e-patient activity and patient advocacy, I’d like to focus for a moment on what it actually means to be a ‘patient advocate.’

It’s important to note first that I’m examining the issue wearing both personal and professional goggles.

As a person with an ongoing ortho condition, I’ve acted as a self-advocate through repeated surgical procedures, rounds of physical therapy, and hospital stays over a 10 year stretch. Professionally, I’ve worked as a paid patient advocate in a small, acute-care community hospital setting. I now work in the online, Health 2.0 space as OrganizedWisdom’s first Chief Patient Advocate, and support additional international efforts to include ‘patient voices.’

First, let’s agree that all patient advocacy is NOT created equal.

There’s a marked difference between acting as a patient advocate for yourself and acting as a patient advocate for someone else.

The major difference? When you’re acting as a self-advocate in the healthcare system, it’s all about maximizing your own outcomes, protecting your own interests, and interacting with your care team to make sure that happens.

In either case, ‘owning’ the patient advocate identity involves acting as an aliment – a nourishing matrix providing supplemental support for the patient, who acts as the protagonist in her own health/life narrative.

When you’re someone else’s advocate, however, you have no control over her outcomes. I say that again, you have no control over the outcomes. Nor should you.

After all, this is not your life we’re talking about – it’s the person lying in the hospital bed.

Repeat after me: “When deciding whether or not to act as someone’s patient advocate, I must realize and acknowledge that I am a PARTICIPANT (supporting role) in this person’s health narrative. I am a part of their story at this time, NOT the author, NOR the main character. This is not about me.”

Patient advocacy (for someone else) is a SELFLESS, not a selfish act.

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