I think we all would agree that finding cures and improved treatments options for cancer are a moral imperative. They will have a dramatic impact not only for those fighting the disease, but also for the families, friends, healthcare providers, and other caretakers that support them in their battle. Personalized molecular medicine provides a promising path forward in cancer care, but accelerating this research requires the brightest minds, great laboratories, cross-disciplinary collaboration, rich software tools and LOTS of relevant, annotated, real-time data. Today we are missing the “LOTS of data” piece, because our health information technology (HIT) and consent systems are not effectively connected for either the improvement of care or the acceleration of research.
Estimates in the U.S. indicate that more than 1.5 million will be diagnosed with – and more than a half million people will die of – cancer in 2010. And, as of 2007, 11.7 million Americans were living with the disease. Of those 11.7 million cancer survivors, it’s estimated that only 5% are enrolled in clinical trials, and only 15% are being treated at major research centers – which means more than 9 million people with cancer are not part of formalized research. This is a highly motivated community, many of whom would welcome the chance to participate in research that could help their children, or their children’s children, receive more effective treatments if they suffer from the disease.
In partnership with the National Cancer Institute (NCI) and SAIC we have built a prototype to demonstrate that we can solve this problem now. Earlier this week at the Partnering for Cures conference in NYC, Ken Buetow, Ph.D., Director at the Center for Biomedical Informatics and Information Technology at NCI and Dr. Jon Handler, from Microsoft’s Health Solutions Group, presented a jointly developed prototype that showcases the potential for information technology to accelerate personalized healthcare research and improve clinical care. Dr. Buetow talks here about the information challenges faced by researchers, providers and patients, and looks at the potential for technology to drive meaningful transformation in support of these stakeholders’ needs.
The prototype uses Microsoft HealthVault and the Patient Outcomes Data Service (PODS) created by NCI to collect provider and patient-generated data on cancer diagnoses, treatments and outcomes. Since PODS and HealthVault are easily accessible outside research centers, the prototype highlights ways to engage a broader set of clinicians and patients in research – making it easier to reach those 9 million people who are not currently represented in research studies. In addition, gathering regular reports from patients on their experience with cancer treatments – for example, tracking daily pain levels, sleep patterns and mood – can provide researchers and clinicians with a richer set of data for understanding the impact of cancer treatments, particularly among certain patient sub-types and populations.
Using Microsoft Amalga, this data can be made anonymous and aggregated with data available in other research databases to create a disease registry that enables more complete analyses of the efficacy of cancer treatments. Providers and patients have the opportunity to not only contribute their own information to benefit others; they can also view trended data from across similar patient populations, enabling shared decision-making around diagnoses and treatment plans.
While the prototype we built focused on cancer research, there is potential to use HIT to further the personalization of treatments for other diseases – Parkinson’s, Multiple Sclerosis, and Alzheimer’s – and begin to see how we can use the power of technology to create closer connections and valuable feedback loops across providers, patients and researchers. Ultimately we hope this will translate to people arriving at critical insights more quickly and partnering with each other to not only improve the care of the individual patient, but also to find cures for cancer and other devastating diseases.