In the 1990s, a now- iconic ad for Apple concluded, “the people who are crazy enough to think they can change the world are the ones who do.” We thank you for being crazy enough to believe that, collectively, we can change the world – and -- and for being insightful enough to see that the profound and enduring transformation embodied in our shared Learning Health System (LHS) vision can only be realized only if all of us work together. If the lifeblood of the LHS is shared real-world health data and the information and knowledge derived from it, the spirit of the LHS is working together to give the gift of health to our children and our nation.
We have reached the epoch of the national (and increasingly global) movement we have galvanized together, anchored in the collaboratively-developed Core Values underpinning the LHS vision that bond us together. If the lifeblood of the LHS is shared real-world health data and the information and knowledge derived from it, the heart of the LHS is this spirit of all working together to give the gift of health to our children and our nation.
Since the May, 2012 LHS Summit, that spirit has inspired 56 organizations to formally endorse the LHS Core Values and over 7600 individual to participate in the movemenexpress interest in the Learning Health Community that evolved from the Summit. These events have brought us to an epochal moment. As hundreds of millions of dollars are being allocated by federal and non-federal sources to create elements of a Learning Health System, we must ensure that these elements evolve into a coherent whole: a single infrastructure supporting health care quality, consumer empowerment, public health, and biomedical research – a —a single collaboratively governed infrastructure serving all stakeholders.
It has catalyzed self-organizing initiatives aimed at collaboratively driving the Essential Standards to Enable Learning (ESTEL), the governance models, and the technology to empower us to harmonize current and future efforts underway across our nation and around the world into an LHS. This spirit has sustained and grown the presence of LHS-focused work at prominent health IT, public health, health law, health policy, and patient engagement meetings across the nation, and has brought our work to the attention of those overseas. Collectively, we have traveled hundreds of thousands of miles and given up thousands of days of our time to actively participate in working meetings held at donated space and to contribute expertise and energies in other ways to this ongoing grassroots work. Some of the individuals driving this effort have each individually invested thousands of hours of uncompensated time and thousands of dollars of their personal funds to sustain the momentum and grow the unstoppable force for health we collectively are becoming.
All of these efforts and achievements, coupled with the insatiable desire by so many involved to make an impact, have opened up opportunities for this movement that can only be seized with the infusion of additional funds. The recently announced memorandum of understanding with the Clinical Data Interchange Standards Consortium (CDISC), a 501(c)(3) nonprofit organization,, for the first time makes renders it possible for the Learning Health Community to accept donations to that help fund the self-organizing initiatives and other important grassroots work that is taking shape. will support key initiatives to realize a national-scale LHS. CDISC is “hosting” the Community. We are writing now to ask each of the organizations involvedyou or the organization you represent to donate generously to support this workkey initiatives to build a single national-scale infrastructure.
Your donation to the Community can be earmarked for specific initiatives should you so select. Initiatives that are underway or planned by the Community include:
Essential Standards to Enable Learning (ESTEL)
Already well established and with the significant momentum of three meetings, ESTEL will identify the smallest possible set of key standards required for the Learning Health System to function at scale.
An initiative to be established soon will identify how a national- scale learning federation can govern and sustain itself.
The Community will create an open sandbox that can be a testbed for the technologies that will support the data gathering, analytics, and feedback functions required by the LHS.
To maintain the balanced, multi-stakeholder character of the Community, the current thinking of the interim Steering Committee is that donations to the Community should be limited to $25,000 in any given year from any one stakeholder entity. Larger support can be accepted from independent foundations and charitable organizations.
FWe are delighted that four charter donors – Altarum Institute, AMIA, GlaxoSmithKline, and HIMSS – have kicked offinitiated these fundraising efforts by donating making generous donations to support the Learning Health Community. As a donor, your organization should expect significant social return on its investment; the impact of donations will be magnified and multiplied by the continued voluntarism and passion of everyone involved. Funds donated will supplement and amplify this grassroots energy, providing resources to support the urgent and ambitious goals of the self-organizing initiatives underway.
If your organization is interested in donating, we encourage you to reach out to Josh Rubin at Josh@JoshCRubin.com for more information. He would be delighted to provide you with details of the donation process. The attached fact sheet provides some additional background vis-à-vis the Learning Health Community.
The work we continue to do together is aimed squarely at attacking this disease head on to transform healthcare and health. With your support, we can accelerate the progress of the grassroots work underway and catalyze new collaborative efforts to empower us to more rapidly realize the LHS vision embodied in the LHS Core Values. Thank you for participation to date in our shared efforts to all work together to give the gift of health to our children and our nation.