It is well understood that achieving the full potential of precision medicine for all cancer patients depends on the sharing of patients’ genomic and molecular data and clinical information. To this end, several efforts — including the Genomic Data Commons, ORIEN, and CancerLinQ — have been established to facilitate data sharing among clinicians and researchers and to create an open environment in which data sharing is more commonplace. Despite these improvements, patients’ health data is trapped in silos spread across a fragmented cancer ecosystem, which remains one of the most significant obstacles to advancing precision medicine. We believe the solution to this obstacle is to bring trusted third-party research and support organizations together in a coordinated effort to directly engage cancer patients in data sharing.
Precision medicine innovations are driven by complex analysis of massive data sets, with researchers querying data derived from thousands of patients for each cancer
. For all but the most prevalent of cancers, no single cancer center or institution has enough data for researchers to gain insight into the genetic mutations and molecular abnormalities that ignite the development of cancer and fuel its progression. These learnings, in turn, help drug developers understand how to develop new targeted treatments and help doctors define optimal treatment pathways for current and future patients.
The Kraft HBS Precision Medicine Accelerator, which we cochair, set out to systematically solve this problem. Given that other data-sharing efforts have been met with varying degrees of success, we knew that a novel approach was required to truly make progress. We decided to create a direct-to-patient initiative using Collective Impact, a framework for tackling social issues first articulated, in 2011, by John Kania and Mark Kramer. Collective Impact is premised on the belief that progress in tackling complex, systematic issues can only be achieved when multiple organizations (companies, governments, NGOs, nonprofits, and so on) work toward a shared goal.
To our knowledge, this is the first time the Collective Impact approach has been used to address bottlenecks slowing the advancement of precision medicine. Based on the promising early results, we believe opportunities exist to apply the framework to other vexing problems slowing the advancement of precision medicine, including the design of clinical trials and data analytics. In the hope that others can learn from our efforts, let us explain how the Accelerator has applied the approach.
The Accelerator, acting as the backbone organization and under the leadership of an experienced senior consumer marketer, began this effort by bringing together five not-for-profit organizations: the LUNGevity Foundation, the Metastatic Breast Cancer Alliance, the Multiple Myeloma Research Foundation, the Pancreatic Cancer Action Network, and the Prostate Cancer Foundation. All are widely recognized for their efforts to expand the use of precision medicine and are, we believe, optimal organizations to educate patients in their role in advancing precision medicine. This view is supported by recently published research showing that engaging with a trusted third-party organization has helped patients better understand the value of their data and how to share it.
Convening these organizations that had always acted in isolation and never had worked together was no small feat. Marketing executives from each organization committed to weekly calls and monthly face-to-face meetings that were led by the Accelerator. For some, that meant flying across the country several times. During these calls and meetings, the executives agreed to adopt a common agenda and share patient engagement data and key suggestions for improvement.
As the initiative got under way, everyone quickly realized the value of a patient engagement scorecard and agreed to track 13 metrics across the five organizations. For example, we measured the number of active patient or caregiver email addresses in each organization’s database. While some organizations had more addresses than others, all had lower number of addresses than expected. The organizations are committed to working to improve this, and each has shared the new metrics with its board of directors.
We also quickly recognized the need to improve our competency in direct-to-patient communication. To this end, we set forth and executed a plan to adopt best practices from leading direct-to-consumer companies in the areas of customer acquisition and retention. Speakers from these companies and digital media firms presented at the monthly meetings to inspire the five not-for-profits to adopt new approaches for reaching patients throughout their cancer journey.
To determine whether the patient journey is similar enough across cancers that a cross-cancer marketing campaign could be successful, we pooled resources to conduct market research to learn more about patient needs, an exercise none of the organizations could afford to do on its own. Initial results show that the journey is similar enough, suggesting opportunities for joint patient-awareness campaigns.
Though still in the early stages of implementation, we have seen that establishing a shared culture and shared goals has led to joint action. We believe that implementing the direct-to-patient initiative using the Collective Impact approach will improve the organizations’ ability to boost patient engagement and increase their willingness to share data, ensuring that all patients benefit from the promise of precision medicine innovations.