It is well known that racial disparities exist throughout health care. This includes disparities in cancer research, treatment, and outcomes.
In a previous HBR article, we offered three ideas to tackle disparities in cancer research: 1) centralize information about clinical trial sites to identify those sites able to enroll more patients from underrepresented backgrounds; 2) provide assistance to sites with great potential to recruit those patients for trials but little experience; and 3) engage patients to increase their willingness to participate in trials.
Since sharing these ideas, which had been developed with the input of numerous participants in the cancer ecosystem, we’ve been told by multiple parties that these ideas are on target and could make a meaningful difference. We’ve also heard about numerous organizations, from drug companies to government agencies to patient foundations, each with their own initiatives focused on addressing disparities in cancer. But these efforts are too fragmented, are not scalable or sustainable, and won’t move the needle. Individual players acting alone won’t achieve meaningful long-term systemic change.
Fortunately, there is a proven approach that can be leveraged to address this problem: the collective impact model. It was developed by Mark Kramer and John Kania and has been expounded on by Kramer and others in a subsequent HBR article.
The model contains five elements: 1) a common agenda and a shared vision for change; 2) shared measurement systems; 3) mutually reinforcing activities; 4) continuous communication; and 5) backbone support organizations to manage the collective impact activities. We believe this model can be applied to reduce disparities in cancer.
Three Lessons from Covid-19
We can learn critical lessons from how this model was just applied to develop vaccines for Covid-19 in record time.
1. Act with emergency.
The magnitude of the pandemic aligned stakeholders around a common vision. That emergency drove action. Similarly, we are at a unique moment where disparities are under the spotlight. Organizations are making disparities a strategic priority and are making investments to address disparities. The key is to harness this energy and attention by convincing stakeholders that greater impact can be achieved by acting collectively than alone. It is essential to seize this moment.
2. Forge a public-private partnership.
The successful rapid development of Covid-19 vaccines was attributable to the participation and cooperation of all key public and private stakeholders. This included governmental organizations, such as the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), and members of the private sector, such as pharmaceutical and biotech companies, clinical research organizations, health systems, consulting firms, and distributors.
In addressing disparities in cancer, the same type of comprehensive public-private partnership is needed. It is important to create the same type of groundswell and make all key players — including cancer-focused research foundations and philanthropies — feel compelled to be at the table as active participants in this partnership.
3. Start with the backbone.
While all of the conditions for collective impact are important, perhaps most important is the backbone organization that takes the lead in initiating and driving collective impact. Mark Kramer and Marc Pfitzer define a backbone organization in this way:
A separate, independently funded staff dedicated to the initiative — the “backbone” of the project — is needed to guide vision and strategy, support activities, establish shared measurement practices, build public will, advance policy, and mobilize resources. These activities can be managed by a single organization or divided among several with differing competencies. The backbone function ensures that all the working groups remain aligned and informed.
In our work looking at the keys to success in accelerating development of cures for diseases, we repeatedly saw that an organization that provides strong leadership is essential. This was the case with development of the Covid-19 vaccines, where Operation Warp Speed provided leadership in bringing together all the key players, as did the Foundation for the National Institutes of Health (FNIH), which led the public-private partnership Accelerating Covid -19 Therapeutic Interventions and Vaccines (ACTIV).
Collective impact to reduce disparities requires similarly strong and effective leadership from a backbone organization with the trust, credibility, experience, and gravitas to bring together all of the key players that care about disparities: government entities, such as the NIH, the FDA, and the US Department of Veterans Affairs (VA); pharmaceutical and biotech companies; research organizations; academic medical centers and health systems; other community-based health organizations; and disease foundations. The backbone could, for example, be the FNIH, which has experience leading public-private partnerships. It could also be a respected private-sector organization or multiple organizations. The backbone organization would take the lead in bringing all the players together, establishing the partnership’s agenda, and securing their support for it.
By acting with urgency, pulling together a broad, inclusive, public-private partnership, and having a credible backbone organization to take the lead, it is possible to initiate an effort that is sustainable, scalable, and can make a long-term difference in reducing disparities in cancer.
Putting the Collective Impact Approach to Work
Working together, this public-private partnership, led by a credible backbone organization, will decide on priorities, determine its specific activities, establish standards and metrics, secure funding (with contributions from both the government and the private sector), and decide how best to allocate that funding.
For example, imagine that the collective impact leader and key stakeholders decide to pursue the idea of creating a centralized database and learning system. The stakeholders could determine the types of disparities-related data about clinical trial sites to collect (eg, catchment area, staffing, funding, leadership) in order assess sites’ ability to conduct trials. In addition, at sites where trials are being conducted, the learning system can gather data to measure each site’s performance in recruiting diverse patients and effectively administering the trials.
The data can be contributed from multiple sources, including the sites themselves, researchers, pharma companies, clinical research organizations (CROs), and consulting firms. In addition to data, the sites and various stakeholders can share information about best practices and lessons learned in selecting sites, improving the diversity of patients in trials, and effectively running trials with diverse populations.
We envision that this initiative and others would be funded collectively by the participants in the public-private partnership, including the federal government (perhaps as part of the Cancer Moonshot), pharma companies, and other players in the ecosystem such as disease foundations and philanthropy . In this way, participants contribute data and funding, and stakeholders are then able to access the database and learning system to review the aggregated data and understand best practices. By acting collectively, the data to make more informed clinical trial decisions will be far greater, the cost will be less, and it will happen faster.
The ultimate result of this work will be more diversity of patients in cancer trials and greater knowledge that the treatments that are developed and tested will work for all patients. This is just one example of how to accelerate cures and reduce disparities through collective impact.
Now is the time to act collectively to make this a reality.