6

Proposal for a Coalition of All Stakeholders

Marcia Kean, chair of strategic initiatives at Feinstein Kean Healthcare, presented a proposal for a broad stakeholder coalition as one pathway for addressing the informatics needs of the cancer research community. Kean noted that the views expressed by many of the workshop presenters regarding the needs, key elements, and general vision for cancer informatics were compatible with the proposed coalition.

In considering a path forward, Kean said it was important to leverage the successes of previous models of collaboration, exploit existing assets and capabilities, and play to the strengths and needs of all the different constituencies in biomedicine as well as in other industries and communities.

ACHIEVING DATA LIQUIDITY IN THE CANCER COMMUNITY

The proposed coalition was envisioned by Kean as a nonprofit membership organization comprising all stakeholders in the cancer community and beyond, who are deeply committed to actualizing a common vision of data liquidity to achieve personalized cancer care and a rapid-learning health care system. “Data liquidity” refers to the rapid, seamless, secure exchange of useful, standards-based information among authorized individual and institutional senders and recipients. Kean suggested that “rapid” would ideally be real time.

Kean referred participants to several exemplars of data exchange (Cancer Genome Atlas; Biomedical Research Integrated Domain Group,



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6 Proposal for a Coalition of All Stakeholders Marcia Kean, chair of strategic initiatives at Feinstein Kean Healthcare, presented a proposal for a broad stakeholder coalition as one pathway for addressing the informatics needs of the cancer research community. Kean noted that the views expressed by many of the workshop presenters regard- ing the needs, key elements, and general vision for cancer informatics were compatible with the proposed coalition. In considering a path forward, Kean said it was important to leverage the successes of previous models of collaboration, exploit existing assets and capabilities, and play to the strengths and needs of all the different con- stituencies in biomedicine as well as in other industries and communities. ACHIEVING DATA LIQUIDITY IN THE CANCER COMMUNITY The proposed coalition was envisioned by Kean as a nonprofit mem- bership organization comprising all stakeholders in the cancer community and beyond, who are deeply committed to actualizing a common vision of data liquidity to achieve personalized cancer care and a rapid-learning health care system. "Data liquidity" refers to the rapid, seamless, secure exchange of useful, standards-based information among authorized individual and institutional senders and recipients. Kean suggested that "rapid" would ideally be real time. Kean referred participants to several exemplars of data exchange (Cancer Genome Atlas; Biomedical Research Integrated Domain Group, 91

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92 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH BRIDG; I-SPY 2 Trial) and noted that the common denominators are that they are all standards-based, manage multidimensional data, and link care and research (i.e., they address the problem of data liquidity). These, and some of the other examples discussed during the workshop, remain isolated efforts, and Kean said that no one is tasked with or responsible for linking them into a national system. Many of the hurdles to achieving data liquidity were highlighted throughout the workshop (e.g., appropriate sampling; high-quality, validated data; privacy; data ownership; intellectual property; IT infrastructure). If these challenges can be met, the opportunities for personalized cancer medi- cine and a rapid-learning health care system will abound. Kean suggested that data liquidity could also increase the "velocity of knowledge"--that is, moving from data to information to insights to knowledge to wisdom will happen much faster. This is apparent in other industries, for example, the financial industry. Principles Kean outlined the proposed coalition principles (Box 6-1), reiterating that they are open for further discussion. She emphasized that while the proposal calls for open technology frameworks, this does not in any way mean that the commercial IT sector will not play an important role. Operational Strategy and Activities As proposed, Kean said that the coalition could deliver rapid, seamless data exchange that would be facilitated by interoperability; driven by just- in-time standards; implemented in small-scale capabilities that are open at the interfaces; and developed incrementally and iteratively to address specific and immediate needs. At the same time, the coalition would be thinking about integrating and coordinating in a systematic way, so that over time these capabilities roll up into a national system. Kean briefly listed a broad range of activities the coalition could undertake. The coalition could convene; advocate; mobilize participation; serve as an honest broker; select and apply standards and catalyze standards development where none exist; provide consulting and project management services via contracts to members; catalyze the building of capabilities that serve immediate needs via contracts to members or others; leverage success-

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PROPOSAL FOR A COALITION OF ALL STAKEHOLDERS 93 BOX 6-1 Proposed Coalition Principles esearch and clinical care can benefit from collection and R analysis of all relevant (and potentially relevant) information, recorded in standards-based formats and curated through appropriate governance structures. Biomedical innovation and achievement of personalized cancer care can be accelerated and improved by facilitating connec- tivity and seamless data exchange among research and care collaborators. Open IT frameworks--defining standards by which technology components can interoperate--provide such capability through open interfaces, enabling researchers to seamlessly capture, aggregate, integrate, analyze, interpret, and transmit data. Progress toward a connected biomedical community that benefits all health care stakeholders can best be implemented in a pre-competitive setting, where all participants are free to contribute and partake of components. Open technology frameworks--which can facilitate the inter- face between open source and/or commercial components-- must be shared freely. SOURCE: Kean presentation (February 28, 2012). ful models of research-enhancing data exchange; act as a guide to advance projects through to completion; and coordinate and integrate capabilities leading up to a national system. Coalition Governance, Funding, and Sustainability Kean proposed developing the coalition as a nonprofit organization that would preserve the honest broker role, perhaps as a 501(c)(6) organiza- tion, comparable in function to a chamber of commerce. A board of direc- tors would be assembled, with representatives from multiple constituencies. Kean listed several potential mechanisms for funding and sustainability, including membership fees (on a sliding scale), consulting fees, project management fees, foundation grants, and government support.

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94 INFORMATICS NEEDS AND CHALLENGES IN CANCER RESEARCH Working Toward a National System In working toward a national system of data liquidity, Kean explained, coalition members would be making a commitment of time and resources and would be vested in the success of the resulting capabilities. Each capa- bility would address a specific problem of importance to the user, and once delivered, the capability would be shared. In addition, the coalition would consistently seek to integrate and promulgate the capabilities. The coalition would be a differentiated, hybrid model in a number of ways, Kean said. It would have the benefit of data exchange through open interfaces while commercial IT companies could be remunerated for their proprietary products or services. It would be a test bed for the capabilities necessary for interoperability. As an open forum, it would seek members from all constituencies; it is not intended to compete with any standard- setting body, but to work adjacent to them and benefit from their work. Importantly, Kean said, the coalition would help ensure that capabilities are not lost as one-off models but rather that they contribute to the national capability. The coalition would also be different from other efforts, Kean said, in that it would not be a data aggregator or a database; it would not be for the benefit of one single community; it would not be owned or led by the government; it would not undermine proprietary software systems; and it would not be a collection of universal standards. It would also not force data sharing where this is not desired, she added. A host of potential benefits would accrue from the successful launch and implementation of such a coalition, Kean concluded. In addition to addressing many or even most of the challenges discussed at the workshop, the activities of a successful stakeholder coalition could accelerate studies and advance new approaches to evidence generation and, ultimately, achieve benefits for all constituencies. In closing, Kean invited participants' feedback on the proposed coalition.