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Finally Fixing Health Care

Source: ChatGPT

Interesting how old posts get new traffic. The heaviest traffic this morning is to Health Care Relationship Management, which ran almost nineteen years ago. That post concerned a Steve Lohr story in the NY Times titled Google and Microsoft Look to Change Health Care.  The gist:

The Google and Microsoft initiatives would give much more control to individuals, a trend many health experts see as inevitable. “Patients will ultimately be the stewards of their own information,” said John D. Halamka, a doctor and the chief information officer of the Harvard Medical School.

The initiatives were Google Health  and Microsoft Healthvault. Never mind why they died. Those links will tell you. What matters more is what I said way back then: The key, as with all VRM projects, is that the solution needs to be anchored on the customer side — in this case the patient side — of the relationship.

As it happens, Adrian Gropper, techie and MD, was on this case long before Google and Microsoft showed up to waste $billions failing to solve a problem they could only compound. And he’s still at it, with HIE of One and related efforts. Here is his Substack. These subjects will be on the floor at VRM Day and IIW later this month. VRM for healthcare will save the world $billions, in addition to countless lives.

Here’s Adrian’s latest.

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Shooting for the World

There is no organisation on Earth with a more audacious purpose than this one:

From Customer Commons’ current index page.

This isn’t shooting for the Moon. It’s shooting for the whole world of business.

What Customer Commons wants to restore isn’t just what was lost when the Internet got real. (For example, privacy.) Customer Commons also wants to restore personal agency that was lost when Industry won the Industrial Revolution. That’s when jobs replaced work, labour replaced teams, and customers became consumers.

That last shift, Jerry Michalski explains, was from human beings to “gullets with wallets and eyeballs.” After that shift, freedom of contract in marketplaces was enjoyed only by businesses. Not by gullets.

Customer Commons was created to change that. It was spun out of ProjectVRM as a 501(c)3 nonprofit in 2013, shortly after Harvard Business Review Press published  The Intention Economy: When Customers Take Charge. That book specifically gave Customer Commons the job of doing for personal privacy terms what Creative Commons did for personal copyright.  And to do it by making privacy a contract between customers and businesses, rather than a “consent” to whatever the hell businesses wanted to shove down our gullets. (For example, with interruptive cookie “choices” that really aren’t and leave no audit trail.)

Work on that began in 2017, when the IEEE approached Customer Commons with an offer to host development of a standard for machine-readable personal privacy terms. That standard, officially called IEEE 7012-2025, and nicknamed MyTerms, was published this past January, concluding nine years of work.

Now what?

MyTerms is a great start toward completing Customer Commons’ audacious mission. Here are some goals we will achieve when that mission is accomplished:

  1. VRM will be a business category, welcomed and engaged by CRM and CX functions on the sell sides of markets.
  2. We will have proof that free customers are worth more than captive ones—to companies they engage, to whole markets, and to themselves. This was ProjectVRM’s original mission in 2006.
  3. The intention economy will materialize when voluntary signaling from customers to companies outperforms and obsolesces surveillance as the primary means for companies to obtain data about customers.

MyTerms is required for all three, because a contract is the only way for companies to commit to respecting personal privacy, and MyTerms is the standard for doing that.

So the first challenge is to make Customer Commons viable as the first mover in establishing MyTerms in the world.

The second challenge is to make Customer Commons substantial enough to lead work toward all three of the challenges listed above. Customer Commons won’t be the only entity working on those. In the U.S., Consumer Reports has already stepped forward as a natural ally.  MyData Global is partnering with Customer Commons in standing up the MyTerms Alliance, which is HQ’d in Europe. There are many other potential partners, such as Mozilla and the EFF.

There is development work on MyTerms already. You can learn more about those at VRM Day, IIW, and AIW, which run M-F through the last week of this month (April 27 to May 1) at the Computer History Museum in Silicon Valley.

Here are other ideas that have been floated in the past for Customer Commons:

  1. Customers Union. Being for customers what the AARP is for retired people. Only bigger, because it would include everybody who is a customer of anything. This isn’t far from Consumers Union, which begat Consumer Reports, and is now its advocacy group.
  2. CustomerCon. A trade show with company booths run by customers, to which companies are invited as guests. Key feature: no complaining. Guest companies are treated only to positive and constructive ideas. HT to Tim Hwang for helping come up with that one.
  3. Omie. A tablet with apps free of Google and Apple. HT to Iain Henderson.
  4. The ByWay, a new path for local e-commerce.
  5. The Free Customer Award. This would be given to companies that value free customers and do nothing to entrap them. The canonical example described in The Intention Economy is Trader Joe’s. But there are others. In-N-Out Burger, for example.

I share those only to give you an idea of how big and influential Customer Commons might be, and how it’s possible to have fun making a new and better economy happen.

We’re not at Square One. Customer Commons is an extant nonprofit, has an energetic board, and a huge accomplishment by getting MyTerms finished. What it needs now is to build out a working organisation. How can we do that?

Let’s look at how Creative Commons got rolling in 2002 and kept moving after that. Here is what I’ve found in diggings so far—

  • The History of Creative Commons in Wired (December 2011) says, “An hour after the court’s decision was announced, the William and Flora Hewlett Foundation presented Creative Commons with $1,000,000 to launch the movement.” The case was Eldred v. Ashcroft.
  • In 2008, there was a successful funding challenge from Hewlett: “The 5×5 challenge, issued in honor of Creative Commons’ fifth birthday, called for the organization to find five funders to each promise five years of support at $500,000 per year. In addition to the Hewlett Foundation, Creative Commons received pledges of $500,000 in yearly support for five years from Omidyar Network, as well as from an anonymous European trust. Google has pledged $300,000 in support renewable for five years, while Mozilla and Red Hat have each pledged to contribute $100,000 annually for five years. The final block of support comes from the board of Creative Commons, which has promised to personally raise or contribute $500,000 to the organization annually for five years.”(Source: Creative Commons Newsletter No.5, February 2008)
  • A Creative Commons  announcement in April 2008 said, “We’re thrilled about a major new grant of $4 million from the William and Flora Hewlett Foundation, consisting of $2.5 million to provide general support to Creative Commons over five years, as well as $1.5 million to support ccLearn.”
  • A MacArthur grant search reports a total of $3,225,000 provided between 2002 and 2022:
    • $750,000 in 2005 to support general operations for three years
    • $500,000 in 2007 to support Science Commons for two years
    • $700,000 in2008 to support general operations and an endowment campaign for three years
    • $25,000 in 2015 to provide travel and other support for attendees of the Creative Commons Global Summit in South Korea, for two months. The meeting was also funded in part by the Institute for Museu m and Library Services and th e Gates Foundation, and by the Korean Ministry of Culture, Sports and Tourism ($25,000), Mozilla ($10,000), and the Wikimedia Foundation ($10,000).
    • $50,000 in 2022 to support dedicated programming on open journalism issues at the 2023 Global Summit, “which is an annual event that brings together educators, artists, technologists, legal experts, and activists to promote the power of open licensing and global access.”

So, by inference, the phases were roughly this:

  • Launch (2001–2002) $1M of initial funding
  • Early build-out (2002–2004) +$1–3M with  additional foundation support
  • Continuous operations (2005 onward) at ~$1–3M/year

That gives us an idea of what we need to raise. (Given inflation, multiply those numbers by 1.5x.)

I’ll tell you more when I find out more. Meanwhile, watch this space. Better yet, jump in and help out.

 

 

 

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Personal AI at VRM Day and IIW

Prompt: A woman uses personal AI to know, get control of, and put to better use all available data about her property, health, finances, contacts, calendar, subscriptions, shopping, travel, and work. Via Microsoft Copilot Designer, with spelling corrections by the author.

Most AI news is about what the giants (OpenAI/Microsoft, Meta, Google/Apple, Amazon, Adobe, Nvidia) are doing (seven $trillion, anyone?), or what AI is doing for business (all of Forbes’ AI 50). Against all that, personal AI appears to be about where personal computing was in 1974: no longer an oxymoron but discussed more than delivered.

For evidence, look up “personal AI.” All the results will be about business (see here and here) or “assistants” that are just suction cups on the tentacles of giants (Siri, Google Assistant, Alexa, Bixby), or wannabes that do the same kind of thing (Lindy, Hound, DataBot).

There may be others, but three exceptions I know are Kin, Personal AI and Pi.

Personal AI is finding its most promoted early uses on the side of business more than the side of customers. Zapier, for example, explains that Personal AI “can be used as a productivity or business tool.”

Kin and Pi are personal assistants that help you with your life by surveilling your activities for your own benefit. I’ve signed up for both, but have only experienced Pit,” or “just vent,” when I ask it to help me with the stuff outlined in (and under) the AI-generated image above, it wants to hook me up with a bunch of siloed platforms that cost money, or to do geeky things (PostgreSQL, MongoDB, Python on my own computer. Provisional conclusion: Pi means well, but the tools aren’t there yet. [Later… Looks like it’s going to morph into some kind of B2B thing, or be abandoned outright, now that Inflection AI’s CEO, Mustafa Suleyman is gone to Microsoft. Hmm… will Microsoft do what we’d like in this space?]

Open source approaches are out there: OpenDAN, Khoj, Kwaai , and Llama are four, and I know at least one will be at VRM Day and IIW.

So, since personal AI may finally be what pushes VRM into becoming a Real Thing, we’ll make it the focus of our next VRM Day.

As always, VRM Day will precede IIW in the same location: the Boole Room of the Computer History Museum in Mountain View, just off Highway 101 in the heart of Silicon Valley. It’ll be on Monday, 15 April, and start at 9am. There’s a Starbucks across the street and ample parking because the museum is officially closed on Mondays, but the door is open. We lunch outdoors (it’s always clear) at the sports bar on the other corner.

Registration is open now at this Eventbrite link:

https://vrmday2024a.eventbrite.com

You can also just show up, but registering gives us a rough headcount, which is helpful for bringing in the right number of chairs and stuff like that.

See you there!

 

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