National Summit: Summary
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National Summit on Personalized Healthcare
Convened by Utah Governor Jon M. Huntsman
October 5-7, 2008
Deer Valley, UT
The 2008 National Summit on Personalized Healthcare, convened by Utah Governor Jon Huntsman, Jr., was held October 5-7 in Deer Valley, Utah. This invitation-only Summit brought together leading stakeholders with varying interests but with shared common goals to engage in a high-level discussion aimed at developing a shared vision of making personalized healthcare a living reality. But beyond developing this shared vision, the Summit took on the mission of identifying specific major barriers to this vision and creating an action plan that the Summit participants and other stakeholders will take to overcome these barriers and realize the shared vision.
The Summit was organized to achieve a common understanding of the possible future for healthcare, especially based on the use of new tools of genomics, molecular diagnostics and informatics. The objectives of the Summit were:
- To create strategies and action plans to accelerate the integration of Personalized Healthcare into clinical practice and healthcare delivery.
- To develop effective strategies to capitalize on the disruptive innovation characteristics of Personalized Healthcare.
- To identify methods and incentives that enable providers to optimize outcomes on both an individual basis and population basis.
Underlying this Summit was the realization that proponents of personalized healthcare have not sufficiently demonstrated the potential benefits in terms of science and informatics, clinical utility, and cost-effectiveness. Achieving these benefits may depend on new approaches in valuation, coverage, and reimbursement and may require new levels of sharing across a healthcare system that is distinguished by the degree of independence of its many separate elements. These represent substantial (and interacting) challenges.
This facilitated meeting began with an evening session that focused on the experiences of 10 pioneering “communities” and early adopters of Personalized Healthcare throughout the United States. The next morning’s opening remarks by Governor Huntsman, Health and Human Services Secretary Michael Leavitt, and Clayton Christensen of Harvard Business School, were followed by a lively panel discussion that offered a vision for personalized healthcare. After two lunchtime keynote addresses by Senator Robert Bennett (R-UT), and Dr. Christensen, the participants worked in small groups to identify and prioritize barriers to integrating Personalized Healthcare in clinical practice. They then organized themselves into five working groups that developed strategies, actions and milestones to overcome these barriers. The Summit continued the following morning with comments from Senator Orin Hatch (R-UT), a long-time supporter of personalized healthcare, and then moved on to hear reports from the five working groups. The meeting concluded with comments from panels on the action plans that these working groups developed. (This report will focus on the discussions and presentations beginning with the first full day of the Summit. Details on the Community Reports are elsewhere in this volume.)
The 2008 Summit, the first of a planned annual event, took place at an inflection point for both personalized healthcare and for our larger national healthcare system. It examined the real gaps in knowledge that still exist, the extent of work yet to be done, and the systemic characteristics that threaten to render personalized healthcare a failed or deferred promise. By the time the Summit ended, the participants had developed a series of joint actions and strategies that they and other stakeholders can take to accelerate the application of personalized healthcare in clinical practice.
Governor Huntsman opened the working sessions by reminding the Summit participants that there is much at stake for the nation regarding efforts to reform healthcare and making personalized healthcare an integral part of any reforms efforts. Successful reform will make healthcare a powerful engine of economic growth, while failure will have severe, multi-trillion dollar consequences for the U.S. economy. It is his hope, he said, that this inaugural Summit would become to healthcare reform what the Davos meeting has become to the world economy.
Secretary Leavitt seconded Governor Huntsman’s comments and provided some chilling statistics to drive home the importance of the Summit’s work. In the early 1950s, healthcare spending accounted for 4 percent of GDP. Today, that figure stands at 16.5 percent and is heading to 25 percent of GDP. That dramatic increase has resulted from the fact that our nation’s medical system today focuses on volume, not value. Reversing this trend demands great science, but also the application of the science to improve the value proposition so that our reimbursement system rewards those medical practices that work, rather than those that move large numbers of patients through the system.
Finally, Dr. Christensen noted that the central problem the nation is facing - that healthcare is going to become impossibly expensive – is not unique to healthcare. Indeed, almost all new industries, including higher education and the automobile, telecommunications, and computer industries, started off being too expensive and too complicated, but each of these industries made the transition into something that was simpler, and more affordable and accessible. Their path from expensive and complex to affordable and simple involved disruptive innovation. And in each case, disruptive innovation required three things to happen:
- Technological breakthrough(s) that changed a problem from complex to simple
- Technology that simplified this problem became embedded in a business model
- That business model had to be connected intimately with a supply chain and business network that could make this happen.
He then drew a parallel between the chemical industry and the healthcare industry. In the years after World War II, there were perhaps 50 people in the world who were skilled enough to work out new ways to synthesize chemicals, and DuPont employed virtually all of them and as a result dominated the industry. However, as chemists practiced their craft, they derived rules that enabled an average chemist to become skilled in the arts of chemical synthesis. Scientific progress commoditized this expertise, rather than replicated it. Healthcare today is where DuPont was 60 years ago. The body’s vocabulary of physical symptoms isn’t large enough to be specific for all diseases, and as a result, too many diseases have very similar symptoms. This leads to too much trial and error, which requires a high-level of expertise, or intuitive medicine. Dr. Christensen then said that this situation will change only when technology transforms the ability to diagnose and recommend care, to make it less intuitive and more rules-based. The process of developing the technologies needed to take healthcare in this direction are coming, and this is quite exciting. However, he cautioned, the U.S. doesn’t yet have a business model or a delivery system in place to enact this model effectively, efficiently, and in a value-driven, cost-effective manner.
In the ensuing open discussion, speakers made the following points that were germane to the day’s deliberations:
- There is a critical need for standards by which to judge value.
- The most direct impact of personalized healthcare will come with the development of specific, accurate diagnostics that will lead to more appropriate therapy with higher value and lower cost.
- Today’s healthcare system involves a tradeoff between quality and cost, but personalized healthcare should be the technical enabler to eliminate this tradeoff.
- The most efficient path for a disruptive technology is to address simple problems first, not the most difficult. For example, the first widespread commercial use of transistors was in cheap pocket radios, not expensive televisions.
- An integrated healthcare system profits from keeping patients healthy instead of treating them when they become ill.
Vision For Personalized Healthcare Expert Panel And Discussion
Following a break, the meeting facilitator, Robert Mittman, convened a panel discussion with Ralph Snyderman, Chancellor Emeritus for Health Affairs at Duke University; Mara Aspinall of Genzyme and Harvard Medical School; and Brent Wallace, Chief Medical Officer of Intermountain Healthcare. Dr. Snyderman made the point that the major problem facing healthcare today is in the delivery of acute treatment for late-stage chronic disease. As a result, personalized healthcare, with its emphasis on early detection guiding value-driven, effective therapy, can serve as the disruptive technology that can effectively address this problem. He noted, however, that developing the predictive diagnostic tools to accomplish this task represents a huge scientific challenge, though once such tools are available, healthcare will not only become personalized, but predictive and participatory, with the doctor-client relationship becoming more of a partnership in which the patient and doctor will develop a wellness plan in response to the physician’s more knowledgeable assessment of that patient’s risk for certain diseases.
Dr. Aspinall continued with the statement that personalized healthcare will need new rules and economics, but if it works well it will save lives and can’t help but save money. The evidence that this approach will work can be found in the way HIV infection and some cancers, particularly hematological cancers, are now treated. Today, for example, we know that there are more than 90 different types of leukemia and lymphoma, and diagnosis and therapy have become highly individualized. As a result, survival rates have gone from virtually zero to as high as 90% with many of these blood cancers.
The problem is getting full adoption of this model, which she sees as a three-step process of fear, followed by realization of value, and then true adoption. Today, we are in the fear stage, where the pharmaceutical industry says that markets will be too small to justify the research investment needed to develop personalized diagnostics and therapies and where payers believe that personalized healthcare will be too expensive. Moving to the value phase will require development of data-driven anecdotes showing that personalized medicine is value-driven. Getting adoption to occur will require changes in medical education, the development of a robust information technology infrastructure revolving around electronic medical records, and a reimbursement system that is based on value, not volume.
Dr. Wallace noted the dire need for large-scale, population-based research, which will require an improved consent process so that data gathered during the delivery of healthcare can be consolidated for research. Today, he noted, there are too many incompatible data systems and there is no good system for sharing data across systems. There is also a need for a new information technology-based educational system for physicians that would push new information out to physicians in a way that they will both accept and use new data as it becomes available. Dr. Wallace commented, too, that intellectual property issues must not be overlooked in any discussion about how to push new scientific advances into medical practice.
Important points raised during the subsequent discussion included:
- Physician societies can play a critical, enabling role in “retraining” physicians regarding personalized healthcare, but they will need to speak with a unified vision.
- For purposes of reimbursement, diagnosis and therapy need to be thought of as two parts of a whole, not two separate entities. Keeping them in separate silos for reimbursement purposes makes it difficult to draw an accurate picture of total costs versus total benefits.
- Patient education will play a prominent role in the acceptance of personalized healthcare given that patients will need to become more involved in managing their own health portfolios as medical practice transitions from one of treatment of illness to one of maintenance of wellness.
- There is a critical need for evidence-based clinical trials, including Federal support for these trials, that will examine how genomic information relates to early detection of disease and identification of predispositions for specific diseases.
- There is the expectation that technology is delivering the disease markers needed to make personalized healthcare a reality, whereas in fact, this is a very difficult scientific challenge. Today, most of the genetic risk factors that have been identified account for less than half the risk for a particular disease, and indeed, we are still in the early phase of discovery in terms of using genomics, proteomics, expression profiling, metabolomics, and other new data-driven techniques to identify predictive disease-related information.
Utah Senator Robert Bennett began a short lunchtime talk with a comment that recent national surveys show that Salt Lake City is one of the three best places in the U.S. to get heath care, and yet healthcare costs in Salt Lake City are 1/3 less than the national average, in large part because of the better integration of the entire healthcare system that has taken place in Salt Lake City. The senator then discussed the Healthy Americans Act that he and Senator Ron Widen (D-OR) are co-sponsoring. The Health Americans Act aims to break the link between the employer and the healthcare system. The person who is making the expenditure – the company – is the same as the person receiving the service – the employee or a family member. The core principles of the Healthy Americans Act include:
- Everyone has to be covered – the system won’t work if people can stay out because those in the system carry the freight for those who aren’t covered. This is an individual mandate. Senator Bennett noted that Republicans have to give up their resistance to this idea.
- Control of healthcare dollars rests in the hands of the individual in the form of a Health Savings Account with standards. The senator commented that Democrats have to give up their resistance to this idea.
- All health insurance is portable, an idea on which both Democrats and Republicans agree.
- The best way to control costs is to make better use of great medicine. Rewarding healthy behavior through incentives, including lowered premiums as people get healthier, and rewarding those practitioners who keep their patients healthier, are necessary to successfully reform the nation’s healthcare system.
Next, Dr. Christiansen discussed in more details his findings on disruptive technologies. Disruptive innovation, he explained, creates asymmetric competition. Every market has an ability to utilize improvement, and every market has a different trajectory that companies take. However, the pace of technological progress occurs faster than the market has the capacity to absorb. Making a new technology that is affordable and simple creates new markets with new planes of competition. Dr. Christensen’s research has found that whenever these disruptions occur, there are three enablers:
- Simplifying technology that commoditizes expertise.
- Business model innovation to deliver that simplified technology in an affordable manner.
- New value network develops with suppliers that are willing to participate in these new markets.
One reason why personalized healthcare has not had much impact on medical practice yet is that the field has not yet developed this business model and the new network with which to distribute personalized healthcare.
What is a business model and how is it built? Dr. Christensen explained that a good business plan always starts with a value proposition – a product that helps customers to do more effectively, conveniently and affordably a job they’ve been trying to do. Next, the business model develops the resources and processes needed to deliver this value proposition to the targeted customers. The final piece of the business model is the profit formula that dictates the value proposition. The key regarding disruptive technologies is that they destroy current business models and require the development of an entirely new business model. As an example, he said that today’s hospitals operate on a horrific business model that would not be viable except for the fact that the reimbursement system is set up to maintain this model. Therefore, for personalized healthcare to make an impact on the nation’s medical and fiscal health, this model will have to be destroyed and replaced by a new model that is still being developed. As an example of a new business model, Dr. Christensen cited National Jewish Health in Denver, which has improved the successful treatment of patients with asthma and other respiratory diseases by developing an integrated care model focused on a patient-specific wellness plan.
Barriers and Underleveraged Resources
Following lunch, Summit participants gathered in small groups to identify barriers that are impeding the development and dissemination of personalized healthcare. The barriers, which served as fodder for the subsequent development of action plans, included:
- Capital constraints
- Lack of awareness about personalized healthcare among the general community
- Gap between scientific understanding and patient care; the rapidly changing biomedical knowledge base is difficult to incorporate into updated clinical practice
- Intellectual property issues relating to gene patents
- Difficulty obtaining regulatory approvals for disruptive biomedical technologies resulting from a lack of understanding among regulators
- Lack of a reimbursement process for medical innovations and disruptive technologies
- No payment system at the Centers for Medicare and Medicaid Services (CMS) to reimburse for molecular diagnostics
- Delinking of the consumer, payer, and provider
- Genetic and genomic knowledge relating to clinical outcome is missing –does value exist when these markers are used in a real clinical setting? The data doesn’t exist yet to guide physician action.
- Paying for volume (fee for service) rather than fee for outcome.
- Failure to reimburse for preventive medicine
- Fragmented or siloed research and development
- Fragmented or siloed healthcare delivery
- Human nature, which leads to non-compliance, little appreciation for preventive actions and life-style changes, and inaccurate risk perceptions among the general public
- Cost and inefficiencies in research and development for therapeutics
- Zero risk tolerance - the expectation of perfection is not achievable, and what we have to live with is relative risk – inhibits the development of improved therapies that offer a substantial benefit over existing therapeutics, but that are still not perfect, i.e., the search for perfection inhibits development
- Uncertainty in the regulatory area make it difficult to attract investor interest
- Uncertainty in the reimbursement area make it difficult to attract investor interest
- No fully dedicated diagnostics division at FDA or CMS.
- There is no good mechanism for bringing combination diagnostic/therapeutic solutions through the FDA approval process
- Our systems are not sufficiently adaptive to reward value across a continuum.
- The introduction of innovation into the system is difficult in a rigid system
- There is insufficient ability to manage medical information in an information-rich world
- Antiquated and legacy models of disease based on organ systems and histology
- Total inability in terms of time, money to generate rigorous outcome data for personalized medicine. Everyone wants evidence, but we don’t have the ability to generate it.
- For clinical trial resources, there’s a scarcity and fragmentation and lack of coordination making it difficult to test new therapies appropriately
- Lack of reimbursement for early adopters
- Business models for payers, providers, and patients are often at cross purposes
- Inefficient use of infrastructure – under-utilized capacity in this country.
- There is a need on the one hand for openness in data sharing in research and development, but also closeness because of the claims of privacy and property rights
- We don’t know how to generate, execute, and evaluate a trial that can identify low-response therapies that will nonetheless benefit certain groups of people
- We need an educational system that trains healthcare providers in a way that works with personalized healthcare
- Lack of an understanding about cultural beliefs regarding medicine – population diversity and a need to develop approaches that recognize this
- There is no financial incentives for doctors to use electronic medical health records
Once this list was generated, the participants then divided themselves into five groups that tackled one or more of these barriers and generated a game plan of specific action items that could overcome the selected barriers. The five working groups were set up to examine the identified barriers from the perspective of business, science, delivery of services, people, and Utah’s emerging personalized healthcare industry and infrastructure. The results of these deliberations were presented to the Summit the following morning following brief remarks from Utah Senator Orrin Hatch on the need to reform Medicare and Medicaid.
Business Perspective Report
This group began its discussion on the premise that it was important to set a relatively short time frame to accomplish realistic goals, rather than setting long-term, lofty goals that might never be realized. With that perspective, the business group set as its primary objective the goal of creating commercial incentives to encourage the adoption of targeted approaches to healthcare that improve the efficiency and value of healthcare outcomes. The group’s members intend to reach their goal within two years and to have quarterly accomplishments that they will be able to report on at next year’s Summit.
In the immediate term, the group intends to create a task force to develop a new reimbursement framework for diagnostics and to develop a framework to support the creation of a diagnostics division at FDA. Over the two-year time frame, the group intends to develop case studies demonstrating the value proposition that can drive adoption of personalized health care by stakeholders. These case studies will focus on diagnostics, the role of healthcare information technologies, and on successful business models. The Personalized Medicine Coalition, whose representatives were part of this working group, is already working on these case studies. In addition, this group intends to develop of definition of personalized medicine that will emphasize its role as an enabler of broader access to healthcare and as a powerful force for cost reduction. This definition will then serve as a foundation for a common language that the field can use in making its case for the adoption of personalized healthcare as a key component of healthcare reform.
This team also identified several metrics by which to judge its success, including:
- personalized medicine becomes part of the healthcare reform agenda;
- the group identifies and engages key opinion leaders in its efforts;
- the group forms teams that develops detailed action plans for meeting its goals in the two-year time frame, including a plan to engage regulatory and legislative bodies; and
- the group develops working financial models for personalized healthcare.
One key to success for this working group will lie in its ability to engage and leverage the work of existing coalitions.
Science Perspective Report
The science working group developed two primary objectives. Its first objective is to develop a roadmap for compiling the data needed to support adoption of personalized healthcare. This roadmap will be based on explicit scientific principles of evidence needed to demonstrate and understand the benefits of a personalized healthcare approach to medical practice and on explicit standards of economic benefit. To accomplish this goal, the science team will first develop a consensus group to identify elements that need to be incorporated into this road map and to establish stratification criteria based on risk and perhaps on new definitions of disease based on molecular criteria. The roadmap will also include a strategy for establishing a stepwise approach to acceptance that will build from easy-to-document cases, and to aid that effort, the team will also identify various sources of supportive data that may already exist. Building on this evidence, the working group will strive to validate findings and then work to gain traction among the payer and provider communities. On a cautionary note, this team said that its efforts must always be patient-centered and clinically relevant.
Measures of success include the development of appropriate financial models and incentives that can be used to garner stakeholder support and the development of a strategy for educating thought leaders about how to judge data showing the benefits of personalized healthcare. Another metric of success will be the identification of places for quick wins and then moving to develop actionable pilot programs with well-defined objectives and buy-in that will mobilize stakeholders to participate in these pilot programs.
The science working group’s second goal is to create a clinical decision support system tied to health information technology and built around a core of phenotypic molecular data. The first task will be to establish a consensus group that will identify key elements, ontologies, and standards for a fully integrated distributed information technology module designed to assist in the clinical decision-making process using up-to-date data. A second task is to identify sources of evidence, whether it be in the form of data from randomized clinical trials, existing registries, databases or networks such as the National Cancer Institute’s caBIG®, the National Cardiovascular Data Registry, and the FDA’s Voluntary Genomic Data Submissions database. In addition, this team intends to develop pilot programs for implementing this information technology module in a clinical care setting. This team plans to hold a joint workshop in July 2009 with whitepapers from each of the two sub-teams and to have a full report ready for the October 2009 Summit.
Delivery Perspective Report
This working group based its discussions on the premise that data must follow a patient through the healthcare system if the goal is to achieve the best possible outcome for that patient. It therefore set as its primary objectives the development of a set of case studies of how an integrated, portable electronic medical record combined with an information technology module that codifies evidence-based practice rules improves health outcomes while reducing costs. The group identified three specific examples involving efforts in breast cancer, diabetes, and cardiac care that it will use to develop these case studies. The team aims to use the data from these three examples to generate outcomes data that will support policy change and to look at what types of incentives would dovetail with these outcomes data in a way that would encourage adoption of this type of fully integrated system. This working group noted that it may also want to look at examples outside of a medical setting, such as the wellness initiative established by IBM for its employees. To meet this objective, this group needs to recruit champions to push these findings among the various stakeholders, an effort that will require the development of an integrated communications plan and engagement of patient groups. This group plans to work with the Personalize Medicine Coalition to identify potential champions and to leverage ongoing efforts by the Coalition and other interested parties.
People Perspective Report
The primary objective of this team is to develop a comprehensive communications strategy designed to educate the various stakeholders in the healthcare reform debate. This strategy will be centered around patients in order to empower them and to reinforce the message that the success of healthcare reform depends on a patient-centered, personalized healthcare approach. To achieve this objective, this group developed a set of tasks that will begin with creating a two-way dialog with patient groups that will identify patient needs that reflect differences in language and culture. As part of this dialog, the group intends to develop a set of definitions and common language that can be used to unify patients behind a banner of personalized healthcare. This effort would also include creating a Web site – MyPersonalizedMedicine.com was suggested – that would enable patients to aggregate their medical information in one place. Such a Web site would also include various patient-education modules, such as one that could simulate, based on specific medical information, how various actions on the part of the patient would influence their health on a short-term and long-term basis. This team also intends to identify incentives and actions that would drive patients to such a Web site and encourage its frequent use, i.e., to make the use of such a Web site become mainstream, a part of modern life. Recruiting national figures such as Oprah Winfrey and the community of television writers to become involved in this effort is paramount to success, which will ultimately be judged based on measures of increased patient involvement in their own healthcare.
Utah Community Perspective Report
This group’s primary objective is to build on Utah’s leadership in gene discovery and diagnostics and on an existing infrastructure recognized as providing the highest quality patient care at the lowest necessary cost to make Utah a leader in personalized healthcare. Achieving this objective will require breaking down the silos and fragmentation that exists even in the fairly well-integrated Utah healthcare system and overcoming the distrust that exists among stakeholders based on past bad experiences. The first action that this group will take is to convene a group that will own this vision, work to integrate the various expertises available in Utah, and identify expertise that is missing but that could help drive this effort. The group may consider recommending that Utah create a personalized healthcare “czar,” that would coordinate and oversee these efforts. At the same time, this group will connect with the already-established Utah Healthcare Task Force to see how these efforts can be coordinated. This working group will also convene a meeting of Utah scientists who may be interested in these issues in order to develop a scientific vision of what personalized medicine means and how it can be disseminated throughout the Utah healthcare system. This group of scientists could also serve as a marketing tool, both within and outside of the state.
This working group also noted that there are some issues that are beyond its control, namely competition, cooperation, collaboration, and collusion; this latter issue has arisen previously in Utah. This group acknowledged that it needs to be mindful of state and national regulations in this regard, particularly concerning data-sharing and patient privacy. This group also intends to develop methods of measuring the value of personalized medicine for the state’s industries in terms of reduced healthcare costs and improved worker health.
Following the working group reports, Mr. Mittman convened a roundtable discussion with Elias Zerhouni, outgoing director of the National Institutes of Health; Peter Traber, president and CEO of the Baylor College of medicine; and Raju Kucherlapati, scientific director of the Center for Genetics and Genomics at Partners HealthCare. Dr. Zerhouni started the conversation by noting that personalized medicine suffers from what he termed from multiple personality disorder, and the clarification that occurred at the Summit represents a necessary step towards the successful integration of personalized healthcare into the medical system. He noted that the Summit’s participants must now undertake a huge effort at conveying what they have done and to drive home the message that personalized healthcare sits at the apex of what fundamentally is more precise medicine, and thus better medicine. Dr. Zerhouni also reiterated the message that perfection is not the goal, but that improved patient-centric care with reduced costs is the goal. Keeping that in mind, the field should aim to develop personalized medicine in stages, focusing first on therapeutics because that is where the greatest impact will be. Diagnostics, which will depend on still-developing science, should be the next target, followed by the development of more accurate predictive medicine. Each of these steps is going to require its own roadmap to success.
Dr. Traber said that he comes away from the Summit both excited by the prospects of personalized healthcare, but unsettled by the many different views of what personalized healthcare means. There is a real need, he noted, for an overarching vision that can unify many constituencies, and most importantly, focus on value to the patient. One important point that came across in this Summit is that personalized healthcare brings science home to the individual, yet science is foreign to the vast majority of the population of the United States. This represents a real challenge to the field, but it also represents an enormous opportunity to link science to an individual’s genome, medication, and wellness. He also commented that it is clear that personalized healthcare needs to be intimately involved in overall healthcare reform and encouraged the Summit’s participants to find ways to sit at the healthcare reform table. At the same time, the Summit discussions made it clear that the medical community must be brought into these discussions immediately in order to start what will be the difficult task of getting enthusiastic acceptance of the key concepts of modern personalized medicine.
Dr. Kucherlapati then exhorted the Summit to follow through on the action plans they developed. He suggested that the Personalized Medicine Coalition could serve as a national organization that would oversee these efforts and keep them on track. He also recommended reaching out to executives in the biotechnology industry, a stakeholder that will undoubtedly play a major role in developing the tools for personalized healthcare and that can help speed the translation of laboratory findings into clinically useful tools. As an example, he cited the collaboration between his laboratory and Genzyme Genetics that will result, starting in January 2009, in all patients at Partners HealthCare with non-small cell lung cancer being tested for specific genetic variants prior to the commencement of therapy.
To end the meeting, Mr. Mittman asked John Glaser, chief information officer of Partners HealthCare; Carol Kovac, managing director of Burrill & Co.; Steve Prescott, president of the Oklahoma Medical Research Foundation, Ray Gesteland of the Eccles Institute of Human Genetics at the University of Utah; and Dr. Christensen to provide some closing comments. Dr. Glaser noted that information technology is central to personalized healthcare and that the Summit teams need to learn more about the many ongoing initiatives at the state and Federal level that could play into this field and to form partnerships with the groups that are overseeing these initiatives. He stressed that no one group can tackle this issue, so building partnerships with other stakeholders and groups outside of the central core of healthcare reform is a critical endeavor that must happen sooner rather than later. He reminded everyone that the goal is not to be disruptive just for the sake of disruption, but rather the goal must be to advance the practice of medicine, perhaps through the adoption of disruptive technology.
Dr. Glaser also introduced a note of caution, reminding the participants that there is still very hard science to do in order to generate the data needed to fully implement personalized healthcare based on molecular diagnostics. Yes, he said, the field should be encouraged by what is happening in the cancer field, but it is also important to remember that common, chronic diseases account for the majority of healthcare spending and that these will be the hardest challenges to tackle.
Dr. Kovac recommended that the Summit participants keep Dr. Christensen’s comments about disruptive technology in mind as these efforts progress. Specifically, she said that the field should be actively searching for low-hanging fruit as a pragmatic way of making progress, but at the same time, the field must not overlook the big, paradigm-changing developments. Efforts that strive for the latter may fail, but the ones that succeed will be the transformative ideas and technologies that make personalized healthcare a reality. She also said that there is a place for the venture capital community to play a role in these efforts, particularly in terms of looking at the bigger picture of what technology can be put together with the right business model and partners to create solutions that patients and payers. She also stressed that the public sector needs to continue funding the science and clinical work that will ultimately prove the value proposition that lies at the heart of personalized healthcare. And in a final remark, she stressed that the field needs to rally around existing coalitions, and asked the Summit participants to consider creating a master map of the actors in this world. Having that master map would lead to strategies that target the key players and accelerate progress in this field.
Dr. Prescott said that he would leave this meeting adopting a broader view of personalized healthcare that is part and parcel of healthcare reform. It is clear, he said, that there is a real need for new business models that reflect the known benefits of personalized healthcare, while also engaging government to become a more active player in this field. He was also struck by the fact that efforts should already be underway to integrate every individual’s personal data because this task will only become more difficult as more molecular information becomes available.
Dr. Christensen provided the final comments by reiterating that going after the simple things is critical. The challenge will be that the thought leaders in the field are involved in solving the most difficult problems, so it is important to keep the simple things front and center. He closed his remarks by noting four common errors people commit in terms of promoting good theory:
People are so anxious to describe what needs to be done that they don’t describe the measure of what the phenomena really are. He noted that he does not see that happening in this field.
There really is value in a common language, and there must be compromise to develop that language.
Sometimes we view the discovery of an anomaly as a failure of theory, but this is wrong – anomalies provide the opportunity to explore what information outliers are providing.
Most bodies of understanding accumulate in an ad hoc, disjointed way, and there can be great value in setting up an organization and journal to be a repository of the best thinking, which in turn, speeds the eventual adoption of theory.
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