Open Letter to Health 2.0 Companies

Look, I get that there is a lot of money to be made from our health data.

But when I sign up to be the latest member of the hottest new online H2.0 community, I have a few expectations you, as an H2.0 startup executive, should know about.

1. Be honest with me.
You expect transparency from hospitals - in fact, we're beginning to demand it (and impose regulatory strictures to that effect). If you're going to monetize my data in order to avoid the whimsy of venture capitalists and angel investors, that's fine. Just let me know you'll be selling off my registration info.

2. Let me know WHY you're doing what you're doing.
Ok, so you want to grow the most robust online health community in the world. You want to be the MySpace of the medical webosphere. That's fine. Just let me know you'll be selling certain 'blind' numbers to marketers interested in my interest in diabetes, such as Big Pharma.

3. Tell me I can opt out.
Don't make me give you my info and preferences to register. I'm still feeling you out at this early stage in our (hopefully long) relationship. I'm sharing my health information with other users because I realize the global community of individuals may bring the wisdom of crowds to bear on conditions with which I'm struggling. I have something to give them and vice versa. Don't make this all about you!

When I sign up for your site and register with an interest in melanoma, guess what - it means my husband has had 3 primary family members diagnosed with the disease. One uncle died. This is no joke. This is not material for your latest D2C commercial.

I want to know how often other families are getting tested, whether they're participating in the NIH study, etc. I DON'T want drug companies or consumer goods firms hawking the latest SPF super + 5000 to contact me.

4. Learn from Facebook's Beacon - a bad decision.

Give me the chance to opt IN to advertiser messages, rather than requiring that I opt OUT to stop receiving the spam that drives your salary base straight out of the middle class stratosphere.

You know, if I'm trusting a Health 2.0 community enough register and provide my 'interests' in a certain diagnosis (thinly veiled DRG or Dx/Rx area), I'd hope the company is as forthcoming.

Ideally, I'd love to see language like that of my idealized disclaimer:

"Dear H2.0 Registrant -

We realize you are trusting us with a hell of a lot of data, including your email and a specified area of medical/health/wellness interest.

With this plus your logon ISP, it's possible to extrapolate a huge amount of data about you.

We can probably search you down, in fact, and sell your firstborn to our advertising partners, without much effort.

Thank you for your trust in us. Let me tell you why we're partnering with outside advertisers.

First - we need to make money in order to become the number one health/wellness site in the world and provide you with more of the services you find valuable.

You want to talk to more people who have experience with melanoma diagnoses - we want to give you that without charging you a monthly fee, which would surely cause you to run for the proverbial hills and delete your account with us.

Second - we don't want to sell out to Google, et. al. or whomever is leading the next round of Web 2.0 acquisitions.

We simply want to be the biggest, best repository for personal health experiences on the Net, and this means we need some moohlah.

Third - we don't want to sell out to 'angel' investors or venture capitalists who may try to impose their own priorities on our operations/strategy.

We want to keep adding users, growing our base, and providing you with the means to harness your own healthcare knowledge. Period."

If any H2.0 company actually explained to me the motivation behind selling my data, I'd sign up.

That's right H2.0 firms: how many of you will take me up on this?

Provide me with a win-win. It's not that hard, given the flat world we live in...let me chat with others who show interest in the same conditions. Who's struggling with the same issues? Who's come up with innovative solutions?

These are things I'm considering as I register with H2.0 companies. If you're thinking of how much money you can make from selling my registration data, think again - you're corrupting the core of H2.0 - consumer directed care.

I direct you to listen. I direct you to listen, or I will NOT use your firm.

After all, I have a lot more to lose than you do.

Best of luck in the brave new world of H2.0-
Jen MG

1 comment:

Scott Shreeve, MD said...


Nice. Put out there front and center in an open and transparent way. I think it is fair to demand transparency on both sides of the table - particularly if the companies want to earn your trust. Trust is a new form of currency that can appropriately be spent, particularly when the trusted explains to the trustee why and how they are spending.

Keep beating away on the Health 2.0 drum. And let me know who takes you up on your very appropriate "open" letter.