One Obstacle to Curing Cancer: Patient Data Isn’t Shared

By Richard G. Haermesh and Kathy Giusti | Harvard Business Review | Noember 28, 2016 | See Original Here

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[COMMENT: This is a very important article, something that we at Focus have been saying for a long time.  Hopefully HBR has enough clout to make a difference. - Alan]

Scientific efforts to find cures for cancer will be severely hampered if the scientific community does not change the ways in which patient data is collected, shared, and analyzed. The development of targeted therapies and immunotherapies — the two biggest hopes for cancer cures — depend on the existence of large data sets comprising patients’ genetic and clinical information. Today, that data is fragmented and guarded in silos. Indeed, the well-kept secret in the cancer space is that progress in finding cures is being impeded as much by the lack of sharing by the players in the precision medicine ecosystem as it is by the stubbornness of the underlying science.

With about 20,000 genes and a total of 3 billion base pairs, finding the mutations responsible for a particular cancer is a daunting task. The larger the sets of data that contain the genomes of numerous patients, the higher the chances of finding deviations that are statistically significant. Only after this can the scientists begin their work of developing targeted therapies to overcome the effects of the mutated genes.

This is where the cancer ecosystem comes into play. Today, the clinical and genetic information of cancer patients is held in a variety of places: academic medical centers, community hospitals, disease-specific foundations, pharmaceutical companies, and the government. There is very little sharing of data among these institutions.

Let’s begin with the academic medical centers, which are the most likely to collect genetic information on their patients. (Many of them are sequencing the genomes of all of their cancer patients.) The reasons they don’t share data lies in the nature of academic medicine. Doctors in academic centers are promoted for their research. Having exclusive use of their own data is crucial for gaining credit for research and obtaining grant money. Add to this the fact that many academic centers often cover the expenses of sequencing the genomes of their cancer patients themselves and you can understand their reluctance to share data.

The motivations of the pharmaceutical companies are similar: Why share data that may be critical to obtaining exclusive, patentable breakthroughs?

The community hospitals, which treat over 70% of all cancer patients, have vast amounts of clinical data but historically have not sequenced many of their patients. Similarly, the disease-specific foundations, whose interests are most aligned with those of patients, typically do not collect genomic data of their constituents. The few who do incur significant costs. For example, the Multiple Myeloma Research Foundation spent over $40 million to collect genomic and clinical information on 1,200 multiple myeloma patients throughout their experience with the disease. The foundation has been exemplary in this regard, and its work over the past 20 years has been instrumental in leading to the development of 10 new drugs for treating multiple myeloma that have helped to triple the life expectancy of newly diagnosed patients. But there are roughly 100,000 multiple myeloma patients and only about 20% are involved with the foundation. The data of the other 80% resides in numerous silos.

What is needed is to reshape the precision medicine ecosystem into one in which data is regularly shared and large data sets are stored in open-access portals available to researchers around the world. The opportunities for patentable discoveries will still exist and will actually be enhanced by the larger data sets, and most important, patients will be helped by the more rapid discovery of desperately needed therapies.

Fortunately, some efforts to reform the ecosystem are underway. Some are being spearheaded by the U.S. government both in the Obama administration’s Precision Medicine Initiative, which aims to collect genetic information of 1 million individuals, as well as Vice President Joe Biden’s Cancer Moonshot initiative. But there are also important private initiatives: the Genomic Data Commons out of the University of Chicago, the Collaborative Cancer Cloud launched by Intel and Oregon Health & Science University, and the Oncology Research information Exchange (ORIEN) — all of which are collecting data from multiple sources, normalizing it, and beginning to make it available in an open-access manner. To give just one example, both the Multiple Myeloma Research Foundation and Flatiron Health have deposited their data on the Genomic Data Commons, thus doubling the size of the data available on multiple myeloma.

While all these efforts are commendable, much more needs to be done. Indeed, one of the primary objectives of the recently launched Harvard Business School Kraft Precision Medicine Accelerator, which we cochair, is to make the broader health community aware of the existing efforts to increase the sharing of data and to get more institutions to join them. Toward that end, we encourage business leaders, many of whom serve on the boards of hospitals and medical foundations, to insist that these organizations start making their patient data available to the broader research community.

The HBS Kraft Accelerator also hopes to enlist patients in the cause. They can play a lead role in bringing about these changes. Today, there is little patient awareness of how critical it is to have their cancer tissue genetically sequenced and to have their clinical and genomic data released for inclusion in larger databases. Doing so would not only aid new drug discovery but would also help patients know which treatment approaches are most likely to be effective and which clinical trials are targeted to their specific mutations. Of course, privacy safeguards need to be put in place.

While it is generally unknown, all of us have the right under HIPAA regulations to request that our medical records be released in anonymized form for research purposes. Unfortunately, few providers make their patients aware of this right. There is a glaring need for patients to be made aware of this. This is one of the main goals of the HBS Kraft Accelerator.

Efforts like these are likely to improve the ways the members of the precision medicine ecosystem cooperate. But for patients like the two of us — one a survivor of a curable cancer and the other living with a cancer for which there still is no cure — time is of the essence. Accelerating the pace of change is something all of us can help accomplish.


Richard G. Hamermesh is a senior fellow at Harvard Business School where he was previously the MBA Class of 1961 Professor of Management Practice.


Kathy Giusti is the founder of the Multiple Myeloma Research Foundation and the Multiple Myeloma Research Consortium. She also is a senior fellow at Harvard Business School.