Cancer and Health IT: Promising Opportunities Ahead

National Health IT week is nearly upon us. And while the developments in Health IT over the last several years have been well documented, more specialized areas, such as cancer care, have been flying under the radar of many technology executives. This is understandable, as cancer happens to be one of our most complicated health challenges and one of our most specialized and evolving areas of medicine.

As a growing disease burden and the second-leading cause of deaths in the US, cancer is rarely mentioned on the common list of chronic conditions that has become part of our national dialogue: diabetes, CHF, hypertension, asthma, depression. The facts remain the same: 28 million people worldwide are impacted by cancer, with nearly half of those cases happening here in the US. The disease is among our most costly, running over $260B annually in medical costs and lost productivity according to the National Institutes of Health.

Fortunately in this case, the lack of a spotlight does not mean there has not been progress in the field. Quite the contrary. The next 12 months will see substantial advances in the information technology available to help patients, survivors, families, and others affected by cancer. Here are just a couple of general areas where we can expect to see some breakthroughs in the next 12 to 18 months.

Enterprise Cancer Research Platforms

 In the last year there has been a surge in the number of analytics platforms in health care. Claiming to help organizations make sense of the big data revolution, dozens of vendors have been riding the wave of momentum created by the nation’s acceptance of accountable care: clinical decision support, business intelligence, CRM to name a few. Many of these are still early in the hype cycle phase; those who were on last year’s HIMSS showroom floor will understand the explosion in the number of these supposed “solutions.” Yet above the market fray in cancer research, there has quietly emerged a revolutionary application of these concepts.

Enabling cancer scientists to join up multiple data sources has produced a learning system that blurs the traditional barriers between “research” and “treatment.” To name a few of these sources: Longitudinal clinical information from treatment records (surgical, therapeutic, diagnostic), molecular testing (tumor assays, genetic and other biomarkers), patient-reported outcomes (surveys, histories, demographics, behavioral). With the IT power to “mash up” these disparate data, we can now form powerful profiles for multiple uses, from scientific or public health research, to health plan case management design, to better treatment. This last category is most important: with an end-to-end profile, patients can be matched to customized treatments or informed of relevant clinical trials. The more the system is used, the more it learns and the better it gets. Importantly, the involvement of the private sector has been the instrumental force behind avoiding the kinds of failures we’ve seen in this area to date.

Here are just a couple of specific examples to watch for in the coming months. The first is IBM’s Watson engine. IBM made a splash last year when they announced they were unleashing Watson on cancer. In a pilot launched at Memorial Sloan Kettering, researchers are using Watson to crunch medical literature into the fold. Watson’s also been a part of a case-management driven pilot through Wellpoint which applies the same principles to systemic challenges of disparities in treatment, outcomes, and costs. These organizations have announced that these pilots will be expanding with broader applications in 2013.

The second involves the Moffitt Cancer Center in Tampa, Florida. Last year Oracle partnered with Moffitt to develop and commercialize a health research informatics platform. Moffitt’s CEO stepped down to run this new entity, M2Gen, and it has been going strong ever since. A rapidly expanding base of consented patients (90k+) across a consortium of 17 sites, combined with strategic business partnerships with pharmaceutical companies (four expected partnership announcements in addition to an existing deal with Merck) could hold the potential to transform the clinical trials matching process, and to speed up the way we discover new cancer drugs.

Patient-Focused IT Resources

One step closer to the day-to-day lives of people and families managing a cancer diagnosis, there is an emerging set of more focused applications which aim to provide cancer patients, survivors and families with the help they need. While the app market will continue to churn out tablet and smartphone programs that provide information, tracking features and networking outlets for members of the cancer community, there are two areas where we’ll see some big developments in the next year on a more sophisticated level.

The first focuses on cancer survivors, for whom treatments and surgeries may come with side effects or complications, for whom fear of recurrence can lead to uncertainty and confusion about seeking help such as follow-up care. For these hundreds of thousands of individuals, the Institute of Medicine identified Survivorship Care Plans (SCPs) – customized, comprehensive guides to health care issues after cancer – as a critical component of improving long term outcomes. In an effort to spur adoption of SCPs the American College of Surgeons’ Commission on Cancer (CoC), which vets cancer treatment facilities in the US, has mandated that all accredited cancer facilities, which treat 70 percent of cancer patients in the US, must start providing patients SCP by 2015.  Yet in a tightly scheduled office visit, clinicians are often ill-equipped (and not reimbursed) to assemble the diagnostic, surgical, and treatment history required to complete a care plan.

This is where the application of IT will play a role.  Partnership efforts with the CoC and the American Cancer Society, led by the Lance Armstrong Foundation, are underway to automate the process of completing these resources. In one pilot study, the LIVESTRONG Care Plan will be auto-filled using electronic health records and data from cancer registries, in partnership with the National Cancer Database. The focus is to produce a set of guiding documents that promote replicability and easy adoption. With similar pilots already underway in states like Colorado and Minnesota, we will see the SCP emerge as a more common part of oncology providers’ workflow and a more widely adopted resources for patients and survivors nationwide.

The second area involves patient-facing clinical trials matching tools. In the last year alone, two portals won an ONC competition for innovative approaches to matching patients to clinical trials through websites. Those pilots have begun to commercialize and will develop further in the coming months. The ONC has also been active in the state of Texas, spurring stakeholders to become active in health IT projects that benefit cancer patients. While it is too early to divulge all of the details, suffice to say there is momentum building around a project to incorporate IHE profiles into a data extraction pilot in Texas that will make medical record data usable by researchers to provide a transparent, up-to-date clinical trials matching process for patients to use.

The Tip of the Iceberg…

 Without going into a substantial level of detail, here are just a few more things to consider:

• Federal Policy: The ONC has shown an increasing interest in cancer. Dr. Farzad Mostashari spoke a few weeks back at the NIH/National Cancer Institute (NCI) summit and stressed the need for innovation in research and treatment. In addition to ONC support for clinical trials and a budding pilot project in Texas, there have been several app challenges (here is the latest) focused on cancer prevention and treatment. And, there are also the Stage 2 meaningful use requirements that incentivize clinicians to collect and transmit data to state cancer registries.
• Cancer Registries: Innovation is happening left and right with state registries. This extends far beyond involvement with survivorship care plans and the MU Stage 2 reporting described above. At the aforementioned NCI summit in August, over a third of the posters involved some kind of pilot project to expand communication between themselves and doctors, patients and hospitals. At a national level, the continued development of the rapid quality reporting system holds a lot of potential for better integration of cancer centers into ACO’s, health insurance exchanges and health information exchanges.
• Personal Health Records: During a recent call with Sean Nolan, architect of Microsoft Healthvault, we discussed the emerging integration of cancer-related apps into the PHR ecosystem. Now that data from medication suppliers like CVS and Walgreens, data from the Blue Button initiative and payers, and patient-reported data from Bluetooth enabled devices to smartphone apps are swirling around in the mix, there is some serious potential to link up these data sources.
• Payers: In addition to Wellpoint’s involvement with Watson, Aetna just announced a similar partnership with Philadelphia-based Eviti to use a knowledge platform to provide case management guidance to doctors and nurses within the provider network. This is of note to an IT audience for two reasons: One, Aetna’s HIE platform, Medicity, is the basis for how clinicians will access these guidelines, paving the way for a potential learning HIE that others have been working on for a while. Two, as the undisputed payer leader in the App world, this sets up some cool integration to plug in provider-facing reference apps focused on oncology guidelines.

Beyond these areas, there is ample potential for innovation and cost-savings related to imaging, secondary consultations, doctor communication, and patient engagement. Clearly, cancer-related health information technologies are thriving. Whether you work in the enterprise IT sector, in health insurance, public health research, natural sciences, or with apps, there is strong momentum in cancer.

It’s important to remember why this is – in addition to the numbers at the beginning of this post, cancer remains one of the most complicated diseases we know. It is expensive, and not always covered (despite the ACA.) It is uncoordinated, requiring patients to navigate between insurers, specialists, clinical trials, and other parts of the system. It is a brutal, awful disease. With so much room for improvement, oncology and cancer care is a perfect area for health IT innovators to unleash their hard work and drive some meaningful change.