The Patient as Collaborator: How Personalized Medicine is Giving Back to the Patient


While the advancement of personalized medicine hinges on collaboration among all stakeholders from researchers to industry to clinicians to policymakers, the ultimate stakeholders in personalized medicine efforts are the patients themselves.  In Total Cancer Care™, patients are not only the ultimate beneficiary, but also the major contributor to the effort.  More than 90% of patients who are invited to participate in the Total Cancer Care™ Protocol accept this offer.  This high participation rate is primarily a reflection of the intrinsic altruistic nature of patients and their desire to contribute to the solution through research.    We formed a Patient Advocacy and Ethics Council to assist us in developing and implementing the Total Cancer Care™ Protocol.  We asked this group, “What can we give back to the patient, not just those patients who may develop recurrent disease, but also those who may be cured by initial therapy?” (Approximately 55% are long term survivors.)  Without hesitation, the council told us that all patients desire to have access to their own information in a usable and understandable format.

To that end, we developed a Patient Portal to the data warehouse which provides patients with their own medical histories, data and other important information.  Under the leadership of Mark Hulse (formerly of Partners Healthcare) and Dr. David Fenstermacher, we began this effort at Moffitt in October 2009, and we are gradually extending the portal access to all patients.   Our goal is to extend this service and resource not only for patients at Moffitt but for all patients at all consortium sites.  Much work needs to be done in this area and requires a much improved “real-time” information system.  We also are developing the system to not only be a repository of patient’s personal health records, but a portal where the patients can use the information to make informed decisions.  Again, working with the Institute of Human and  Machine  Cognition (IHMC) we are developing virtual learning technology and applying a process called C-map tools, originally developed at IHMC, to assist patients and physicians to navigate the Internet resources to ultimately meet patient’s needs.

In summary, these are very exciting times.  I truly believe we are at the threshold of translating and just as importantly, DELIVERING on the promise of personalized medicine.  We hope that our effort in developing Total Cancer Care™ will be a major part of the foundation of what some day will be considered common place—a healthcare system and technologies that are organized in such a way that every patient’s needs are identified and inform an individualized approach to meet their needs.  Primary stakeholders in developing personalized medicine, including researchers, clinicians, industry, policymakers, and patients themselves must come together to organize the framework and environment to promote personalized medicine.  It is unrealistic to expect any one stakeholder to collect the resources needed to create a rapid learning information system that will be required to capture data, leverage and enhance informatics needed for analysis, and communicate new knowledge to all the stakeholders involved in developing a better healthcare system built on the foundation of personalized medicine.  Teams comprised of broad expertise across the healthcare and research spectrums, and an unprecedented effort by all will be required to exploit the advantages of the necessary team science approach.  To complement the scientific infrastructure and technology that has already been developed, additional resources will be required including expanding information systems to community hospitals and physician practices, such as electronic medical records, biomedical informatics applications, and information technology professionals.  Ultimately, by developing evidence-based healthcare systems, we will improve the quality of healthcare by identifying best options for patients based on their personal traits and characteristics; such is the promise of personalized medicine.

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