Why I Didn't Sign the Declaration of Health Data Rights - Yet...

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:

1. The language as is, opaque by necessity in order to get many important signatories (which I understand and accept), is largely not actionable. Terms are so loosely used that it will be very challenging to state with certainty when a 'right' to health data has been abused. Example: What does "minimal cost" mean to those who hold my health data in the bowels of their systems?

2. How will we hold organizations (or individuals) accountable if they abuse our rights to health data? There are no suggestions given, in the preamble or media blitz materials.

3. How will we build tools, systems, services, and conversations that help people who have been, will be, and are today patients, navigate these rights? Were they provided in any other language? Are they different for children and adults?

4. Where are the patient advocacy organizations? Where is NAMI and the like? Many employees and volunteers at organizations like this one would have plenty to say on the issue of composing a Bill of Health Data Rights, and useful or not, it would at least help refine the concepts displayed here with more specific and stirring language.

Maybe I expect too much. Maybe I want the impossible. Maybe I would sacrifice several (or all) 'large' or 'famous' signatories of the Bill in the fight to have the language that I feel is life-saving included.

Maybe I would also fight from within the system to encourage all of the parties who currently hold MY health data that it is, in fact, mine to choose to access (or not), to share (or not), and to control (or not).

Maybe I have. Maybe I am still.

But overall, there is one central tenet missing from the current Bill that, if included in explicit language, would result in me signing, and it is this:

My health data is my own.

End of story. I don't have to reclaim it. It's already mine.

Please note - It is a completely different issue for my health data to be tricky or dangerously expensive/time-consuming to obtain or inaccurately kept/updated/shared within the system.

These issues, and these differences, are not even mentioned in the bill or accompanying language, and I fear that is a near fatal diagnosis that will prevent this effort from playing any lasting role in my pursuit of wellness beyond some extra blog hits and sound bytes.

My health data rights already are being abused, and I will stand up against that abuse, personally and for others, and advocate for change. I am utterly committed to doing so.

Here's where I get myself into real trouble...

That also means I don't do things in half-measures. If it's not good enough, it doesn't go out.

If a Bill of Health Data Rights doesn't acknowledge vital programs CURRENTLY IN PLACE in hospitals to help make people who are patients aware of our rights, like the JCAHO Speak UP! Program, it fails to connect patients with resources OUT THERE IN THE REAL WORLD more tangible than a Hallmark-card-esque Bill of Rights.

If a Bill of Health Data Rights doesn't direct me to SOMETHING, SOMEONE to call, or email, or txt, or tweet, or a senator to whom to write a letter or fax a protest, then it has failed me as a patient.

It has failed me because now I've got my rights, but what the hell do I do with them?

Perhaps worst of all is the last omission, which I find most aggregious - if a Bill of Health Data rights doesn't use terminology that ties the ABUSE of those rights to ACTIONABLE CONSEQUENCE then it has failed me.

The failure (conscious or not) to include the term "personal health information" or PHI, that would 'link' these rights to actionable, legal consequences under current legislation is a failure of the worst kind. It is either a failure of ignorance or of fear, or of both.

And revolutions, my friends, do not light a bonfire by being afraid of tyranny. Revolutionaries throw firebombs at the doorways. Yes, revolutionaries build barricades. Revolutionaries lay themselves down in protest in the line of fire.

This Bill of Rights does none of those things.

It is the equivalent, at best, of holding up a lighter in protest. Peaceable (not necessarily a bad thing). Lukewarm. Ineffectual.

I must be a radical, and God help me, I'll probably never work in this town again.

But apparently I'll have plenty of work to do lobbying for a Bill of Rights that has some sticking power. I hope to do it with those of you who are committed to holding the match, if I haven't just burned all my connections to cinders.

Here's the accelerant I'd use to start:

BASIC HUMAN RIGHTS: Health. Life. Liberty. The Pursuit of Happiness.

PREAMBLE

We the people hold these truth(s) to be self-evident:

1. Our health data is our own.

2. Our health data is an asset. It shall be legally described, and protected, as such.

3. Our health data is a part of who we are - it is not the sum and total of our identity.

BILL OF RIGHTS

1. It is my right to know which people and organizations are writing, recording, sending, and receiving my health data.

2. It is my right to have included in my record a listing of who, what, when, where, why and how my information is stored and shared.

3. I have the right share my health data with whom I want, when I want, through any means of communication I choose.

I'd then take the above rights and reword them to demonstrate that people who are patients have the choice and control over personal health information (PHI) to release it only when and where and to whom we choose.

This is my right - to have choice and control over my health data. These rights, more fully explained (but still in very blunt-force-trauma form) look a bit like this:

5. I have the right to choose and control who sees my health information.

6. I have the right to choose and control who shares my health information.

7. I have the right to choose and control who profits from my health information.

8. I have the right to refuse access to my health information.

9. I have the right to correct inaccuracies in my record.

10. I have the right to protest data I view as inaccurate, and to have a record of that contestation included in the record.

11. I have the right to report inaccuracies in my record(s), or abuses of my health data rights, to a HealthDataRights.org, the Better Business Bureau, and my elected representatives.

If I still have a job tomorrow, I'll see you all 'online' then. Where I'll be working to protect health data rights I already own.

Jen S. McCabe
@jensmccabe

CEO/Founder: Contagion Health
CoFounder: NextHealth (NL)

Consulting/Chief Patient Advocate (social media):
OrganizedWisdom Health

LinkedIn: Jen McCabe
Skype: jenmccabe

iPhone: 301.904.5136
Dutch Mobile: +31655585351

jennifermccabegorman@yahoo.com

Jun 22, 2009

e-Patient Dave said...

Oh, for heaven's sake, Jennifer, stop with the breast-beating! :) You are allowed to have your own view and not apologize for it!

Silly fire-starter.

tmana said...

Love the basic premise... but a couple of issues to consider:

(1) Who owns my body? While the various declarations of human rights state that we own our own bodies (life, liberty, and property), legislation and regulations prohibiting suicide, refusal of care, and use of recreational intoxicants (other than limited amounts of alcohol and nicotine), among others, tell us the opposite: we, and our bodies, belong to the State.

(2) Copyright/ownership of information belongs to all its authors, in proportions. My health data is based on my body (my/the State's ownership), the lab data (the lab's ownership), and my doctor's interpretation (the practice's/provider's ownership). It could also be argued that he-who-pays-the-medical-bills also has an ownership stake. For most of us, this is our employer. Each ownership party has a right, through ownership, to profit from that information, provided that the other ownership parties are not harmed in the process.

(3) Public benefit. It can be argued that withholding non-personally-identifiable data removes vital information points from the public data and the understanding of states of health and disease. In a society where there is a value placed on that public benefit, and that said benefit is valued more highly than individual privacy, then it could be said that any process that withholds that data from the public record harms the public and could/should be prosecutable.

As a libertarian, I believe that *I* own my own body, but I also recognize the joint ownership of the data generated from my body, the rights of other owners to profit from that data (so long as I am not harmed by that profit), and the importance of having that data readily, and accurately, available in anticipation of providing me the appropriate treatment in an emergency.

Robin S said...

Hi, Jen. I, too, believe my data is my own and has always been. I believe this bill is a step in stating that obvious fact. However, it doesn't seem so obvious to those who "hold" our data. If you notice, in my comment that I put when I signed as endorsing these Health Data Rights, I put "amend" in there, too.

I didn't endorse the bill because it is perfect. It isn't. I suspect none of us will have the same standard of perfection at any point in time. But it does point out much of what should already be obvious to the aforementioned data holders. And we can further emphasize (like you just did) what we think should also be added/changed/deleted from them.

Somebody had to start somewhere or we'll be spinning our wheels way too long. So, now we all have a jumping off point. You are already jumping! And I'm loving what I'm reading here and other places.

I'm froggy......and plan to jump, too. ;)

Jen McCabe said...

<tr><td>:) Anyone have a cat-o-nine tails?

Jen S. McCabe
@jensmccabe

CEO/Founder: Contagion Health
CoFounder: NextHealth (NL)

Consulting/Chief Patient Advocate (social media):
OrganizedWisdom Health

LinkedIn: Jen McCabe
Skype: jenmccabe

iPhone: 301.904.5136
Dutch Mobile: +31655585351

jennifermccabegorman@yahoo.com

---</td></tr>

<tr><td>Excellent, well-thought out response and comments - thank you! If we consider health data as assets unified under "one blood one body" in the libertarian school, it certainly simplifies things for composing such a declaration.

But you're absolutely right data from me and data generated ABOUT me (and my body) may have different owners...how to address the 'body commons' here? Would like some of the P2P Foundation folks to weigh in...

Jen S. McCabe
@jensmccabe

CEO/Founder: Contagion Health
CoFounder: NextHealth (NL)

Consulting/Chief Patient Advocate (social media):
OrganizedWisdom Health

LinkedIn: Jen McCabe
Skype: jenmccabe

iPhone: 301.904.5136
Dutch Mobile: +31655585351

jennifermccabegorman@yahoo.com

---

</td></tr>

<tr><td>Robin - this sound is me clapping in the background...:) Extremely well-said!

Jen S. McCabe
@jensmccabe

CEO/Founder: Contagion Health
CoFounder: NextHealth (NL)

Consulting/Chief Patient Advocate (social media):
OrganizedWisdom Health

LinkedIn: Jen McCabe
Skype: jenmccabe

iPhone: 301.904.5136
Dutch Mobile: +31655585351

jennifermccabegorman@yahoo.com

---</td></tr>

Jun 25, 2009

HITshrink said...

Jen, I applaud you for resisting the drumbeat. I've asked around for a discussion about the pro/con of this and couldn't find. I think my resistance has to do with (a) this body commons notion, and (b) the over-sanctification or "personal health data."

Taking this to the extreme, if I make an observation of someone else's health, my observation immediately would belong to them and I would be prevented from expressing it. Not cool. That would mean that when Steve Jobs next walks out on stage, no one could comment on his health unless he gave permission. "Apply only to health care providers," you might say. Okay, now the reporters in the audience can tweet about it, but I have to keep my mouth shut? Probably the only way out of this one is to have it apply only in situations where there is a formally established patient-provider relationship. Even then, it is co-owned data since it is dependent on both the pt and the observer. (Lab data would be different, in that it is not interpreted... Hemoglobin A1C=14.9 is a piece of data... "out-of-control diabetes" is a person's interpretation.)

Here's a thought. Perhaps the Right should be that if you *paid* for the data in the first place (by insurance, out of pocket, etc) then it should belong to you, and you can lend out revocable rights to access it.
=Steve

Hi, Steve.... I have a question: Don't I (the patient) pay for your interpretation, too? If so, is that not my data, also? (If it goes into an EHR/PHR it is data.)

I don't know if you read my post about this, but the bottom line for me relative to your thoughts about me/my data is this: If you are going to share any interpretation with any other medical personnel, then I should have the right to see it, too. If you are not, then that is moot. You can notate and interpret for yourself all you want.

Robin, I am pointing out two different situations.

The first is where I am a health care professional who is engaged in providing health care treatment to an individual. I agree that one should have the right to access that data and to know with whom it is shared. So I agree with your last paragraph.

The second point is more grey. Now I am an individual, not engaged in providing health care to a specific individual, and I happen to work as a health care professional. This is the cocktail party analogy. If I make an observation about someone (eg, "Steve Jobs looks anemic"), is that "health data?" If I write it in a blog, does that information "belong to" the individual? Is there any difference because I am a health care professional, or does that muzzle me from rendering observations?

I don't think that the currently proposed bill of rights adequately covers these areas.
=Steve

Thank you, Steve.

Jun 26, 2009

David Harlow said...

Jen -- I agree with you that the declaration as it stands is unobjectionable, but doesn't go far enough. I also agree with some of the instigators who seem to believe that starting small is better than not starting at all, and going public with the declaration as-is can at least serve to get the conversation started. I also think that many of the additional items you've set forth are rights already protected by current law. (I know that having a right doesn't necessarily mean it's honored ...) As I tweeted yesterday, I think that the angle here may be to work on getting a new form of NPP (notice of privacy practices) under HIPAA endorsed by supporters of the Declaration, a form that encompasses the rights you describe. This should be made part of the NPP by providers, but if they hesitate or object, there is another approach available -- a patient addendum to the NPP (which will drive providers nuts, and may be unadministrable, but to carry forward your revolutionary motif, and shunt it through Alice's Restaurant, if we get 50 people a day ... then, friends, it's a movement - which ultimatley gets more traction.

HITshrink - Your "cocktail party" or "blog" observations are not part of anyone's "health data;" as you described them, they're not part of a doc-pt relationship. Seems to me you'd have to answer -- as a friend, not as a provider -- for having disclosed them.

Jen’s Posterous

Why I Didn't Sign the Declaration of Health Data Rights - Yet...

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