Did you know that a major aspect of the Affordable Care Act (aka the health reform legislation) was significant funding to revamp primary care? I’m embarrassed to say I didn’t. There’s $10 billion (with a B) in funding for research in the first ten years on new models of primary care, and another $10 billion to support proven improvements.

That’s $20 billion, the same amount as the health IT incentives that have gotten so much publicity. But almost nobody has heard of this.

But that’s changing. A new working group is forming in Boston: CCTWG, the Collaborative Care Technology Working Group.

The group’s purpose is to accelerate doing something useful, promptly to make good use of that money: getting some minds together to do hard work, advancing the common perspective of what collaborative care can be, so that products developed for this movement can have a shorter learning curve. Their concept of “collaborative care” sounds an awful lot like participatory medicine to me:

Collaborative care organizes information, expertise, and resources around the “whole patient” for better decisions and optimal outcomes, starting with primary care.

Several members of the Society for Participatory Medicine attended the organizing meeting on June 30: Susan Carr of Patient Safety & Quality Healthcare, Janice McCallum of Health Content Advisors, and Lisa Gualtieri of Tufts. It was a fast-paced two hours. At bottom I’ve pasted in the tweetstream. (Non-Twitter users, please pardon the jargon; I think it’s all understandable. The things starting with @ are people’s Twitter names.)

The co-founders are Alan Goroll, MD, who was deeply involved in drafting the legislation in Washington, Tom Iglehart of Care Commons, and Anne Marie Biernacki, co-founder of AdhereTx. The slides presentations are posted on their blog, and an informal 17 minute video (so-so lighting) of Dr. Goroll’s presentation is on their About tab. Please watch that video. And notice how often “patientparticipation” comes up. It’s clear this is an idea whose time has come.

Caveat to potential members – as the tweets & video show, this is not a “subscription” to come watch the events – this is a hard-nosed working group, with substantial homework assignments and a $795 membership fee. The co-founders are looking to select a good mix of people who want to get things done, created, delivered, in use. And as the tweets say, they’re considering other forms of membership: the purpose of the price is not to be exclusionary, it’s to be action oriented.

After the eons of debate that got nowhere, I could use some action! Good luck to them. And since it’s about patient participation, let’s hope there’s a strong patient voice.

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Here are the tweets, harvested from www.WTHashtag.org and edited a bit for clarity [edits are in brackets].  Please comment to question or clarify things – my tweets ain’t perfect! Dr. Goroll’s words in the video trumps anything in the tweetstream.

@ePatientDave: Tonight’s 1st mtg of new “Collaborative Care Technol Wrkg Grp” 6:30 IBM Waltham MA http://bit.ly/8YrkAG

@ePatientDave: Huge and awesome attendance list for  6:30 tonight IBM Waltham http://cctwg.eventbrite.com/#m_1_100

@ePatientDave: Welcome @JosephPGerry new tweep IBM host of tonight’s  event!

@ePatientDave: @JosephGPerry opening remarks at  http://cctwg.eventbrite.com/ – story of 1 woman in West Va working to change HC herself

@ePatientDave: Next up – Patrick Boyle local IBM HC manager. (They’re hosting the evening)

@ePatientDave: IBM has studied global HC for its employees & tweaked for years – have data from employees in 100+ countries

@ePatientDave: IBM spend $2 bn/yr globally on employee healthcare costs – their data shows ^primary care=^outcomes lower costs

@ePatientDave: Hashtag #cctwg is new “Collaborative Care Technol Wrkg Grp” – collab care is participatory relationship betw provider & pt

@lisagualtieri: Fun to be literally surrounded by @ePatientDave @janicemccallum @SusanCarr  #SPM

@ePatientDave: Allan Goroll MD: “If we can say anything about HC it’s that it’s complex. Washington is starting to get it.”

@ePatientDave: Goroll: health IT has no economic benefit until it gets to *decision support*

@DanRPG: Wow US is ranked 25-35th in WHO measures of quality & healthcare

@ePatientDave: Goroll: where primary care is better costs & outcomes better & fewer disparities: the goal of all public health policy

@ePatientDave: Goroll: must concurrently fix health insur primary care delivery (no more silos) & payment (from volume to value)

[Around 9:30 in the video] @ePatientDave: Thank g-d  Goroll’s saying the obvious about what happened when Mass added universal care… [A ton of new people have access to care, call primary docs, find they’re full, so they go to local emergency dept for non-emergency issues.]

@ePatientDave: Goroll cites *idiotic* response to primary care shortage: “Build more EDs” [Govt response to situation was to provide funds for more EDs, not to solve the root problem – primary care!]

@ePatientDave: Problem was that the newly insured couldn’t get a primary so they went to EDs. Building more EDs is STUPID response.

@ePatientDave: This  series will focus on primary care revitalization. (“Collaborative Care”)

@ePatientDave: Goroll describing intimidating experience of testifying to Senate. Yet – “There is no debate – all agree primary care important”

@ePatientDave: Elements of transformation: Care coordination; team collaboration; patient participation ….

@ePatientDave: not patient participation in a silly way like a do-it-yourself kit; when yr preferences & thoughts go into decisions

@ePatientDave: Next ingredient: Decision support; monitoring [wisely] (story of how F-16 was too complex – too much info [on the displays; pilots were overwhelmed and crashed; F-22 had much simpler/clearer displays]); payment reform [how to tie it in so it supports what we need – our current payment system is what you’d expect – high costs low value – our current system pays very well for expensive things not for quality things]

@ePatientDave: Goroll’s next: review a key component of reform law relevant to this group; then relevant #meaningfuluse criteria

@ePatientDave: Goroll recounting the young Senate staffers working their butts off on writing the legislation. Praise.

@ePatientDave: Part of HR3590 reform law: Ctr for Medicare/Medicaid Innovation [CMI] – test innovative pmt & svc deliv models;

@ePatientDave: Goroll proposed $1.5Bn for CMI. 8 wks later prelim language said *$10* Bn. Amazingly it didn’t get removed – not even challenged

@ePatientDave: Goroll’s point: Enter the primary care reform movement knowing this is NOT disputed, is NOT going to be killed.

@ePatientDave: Principle criterion [for a good action to pursue]: addresses a defined population w/ deficits in care leading to poor outcomes or avoidable costs.

@ePatientDave: Addl criteria: monitor & update pt care plans; pt family care; appropr technol; close relns; team based; share info

@ePatientDave: (Goroll’s texty slides about criteria will be posted)

@ePatientDave: (I’m feeling sheepish that all this primary care stuff was in the law and I didn’t get it…but others in the room are same)

@ePatientDave: No wonder this is $10Bn – vast range of models to test to gather info on what works. Evidence-based policy decisions (!!)

@ePatientDave: Final big point: Secy of HHS can modify the program without another Act of Congress. [That’s a] Huge enabling provision.

@ePatientDave: The $10Bn is over 10 years – then another $10Bn for next 10 yrs to *support* proven improvements.

@ePatientDave: Tony Rodgers of AZ Medicare has been hired as director of CMI

@ePatientDave: Significantly #MeaningfulUse criteria start w the policy goal. Then care goals then specific objectives & measures

@ePatientDave: (In all I’ve heard/read about #MeaningfulUse this is the clearest it’s ever been to me. This guy’s smart :–))

@lisagualtieri: Agree RT @ePatientDave (In all I’ve heard/read about #MeaningfulUse this is the clearest it’s ever been to me. This guy’s smart :–))

@ePatientDave: Huh: EMR vendors didn’t always offer patient registries – now it’s required.

@ePatientDave: Vendors are being required now to take time out from “liability reform” to make their systems safer instead (!!)

@ePatientDave: Man am I wishing I brought my flipcam

@ePatientDave: Hey @GarySchwitzer – Goroll cites disease mongering. (I gave away 2 of yr “10 criteria” mousepads from @FIMDM already)

@lisagualtieri: The devil’s in the details. “Provide patients with…” was a theme but how? Is that why IBM is sponsoring?

@ePatientDave: Goroll’s finished. Future meetings will NOT be lectures like this – there will be homework & mtgs will be for discussion and work.

@ePatientDave: This is intended to be a serious incubator group not a “symphony subscription” like “I’ll come watch the Mozart series” :–)

@ePatientDave: MAN am I glad I came to this. Never had the inside story of the legislation & work since then.

@ePatientDave: Tom Iglehart up now (CareCommons) – compares HC to transcontinental RR after Civil War. Ambrose book “Nothing Like It in the World”

@ePatientDave: Iglehart laying out the purpose of this group – lengthy meaty list.

@ePatientDave: Next: group’s cofounder @AMBiernacki

@ePatientDave: Big point here is that the legislation seriously enables getting things done.

@ePatientDave: Membership in this series is a 10 month commitment $795. Expecting 30 participants.

@garyschwitzer: Go forth and spread the word.  RT @ePatientDave: I gave away 2 of yr “10 criteria” mousepads from @FIMDM already

@ePatientDave: Future membership types are contemplated. Purpose isn’t to be exclusive it’s to be action oriented.

@ePatientDave: Iglehart cites Jefferson quote on idea-sharing http://thinkexist.com/quotation/he_who_receives_ideas_from_me-receives/196063.html [“He who receives ideas from me, receives instruction himself without lessening mine; as he who lights his taper at mine receives light without darkening me”]

@ePatientDave: Measures of our success: New projects, new partnerships, new collaborations.

@lisagualtieri: Thrilled to thumb through @ePatientDave new book @LaughSing out soon. Looks great. Unexpected  bonus.

@ePatientDave: Whoof. I haz the $795 brain hornies for joining this group.

@ellenhoenig: And new learning?RT @ePatientDave Measures of our success: New projects new partnerships new collaborations.

@ePatientDave: Goroll: We’re like a club – instead of collecting & trading baseball cards we’ll trade ideas. :–)

@ePatientDave: @ellenhoenig Yes per earlier tweets learning/homework is absolutely required. Prerequisite and the purpose.

@lisagualtieri: Is “meaningful use” the best term?  #HCR

@ePatientDave: Goroll on decision support – telling brain tumor / headache story – he proves top-dog docs can be totally empathetic

@SusanCarr: See @ePatientDave @lisagualtieri for  New group forming for primary care innovation. Collaborative seminar model to find solutions

@lisagualtieri: @DrTonyaH Where are you, what Goroll described about decision support is what you do

@ePatientDave: Q&A: How will u make sure this group won’t be myopic lacking insight from outside the industry?…

@ePatientDave: A: “Are there any patient advocates in the room?” Ahem. :–)

@ePatientDave: Time’s up – that’s a wrap!

@healthblawg: @ePatientDave Thx 4  twts- #hcr makes #ACO #PCMH etc sing 4 PCPs. I’ve gotten folks approvals 4 CMS demos B4 & enjoy this work.