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 address disparities in cancer research: 1) centralize information about clinical trial sites to identify sites able to enroll more patients from different backgrounds underrepresented; 2) provide assistance to sites with great potential to recruit these patients for trials but little experience; and 3) engaging patients to increase their willingness to participate in trials.
Since sharing these ideas, which were developed with input from many participants in the cancer ecosystem, several parties have told us that these ideas are on the right track and could make a significant difference. We also heard from many organizations, from pharmaceutical companies to government agencies to patient foundations, each with their own initiatives focused on addressing cancer disparities. But these efforts are too fragmented, not scalable or sustainable, and won’t get things done. Individual actors acting alone will not achieve meaningful long-term systemic change.
Fortunately, there is a proven approach that can be leveraged to fix this problem: the collective impact model. It was developed by Mark Kramer and John Kania and was exposed by Kramer and others in a later HBR article.
The model contains five elements: 1) a common agenda and shared vision for change; 2) shared measurement systems; 3) mutually reinforcing activities; 4) ongoing communication; and 5) grassroots support organizations to manage collective impact activities. We believe this model can be applied to reduce cancer disparities.
Three lessons from Covid-19
We can learn key lessons from how this model has just been applied to develop vaccines against Covid-19 in record time.
1. Act with urgency.
The scale of the pandemic has aligned disparate stakeholders around a common vision. This urgency prompted action. Likewise, we are at a unique moment when disparities are in the spotlight. Organizations are making disparities a strategic priority and investing to address them. The key is to harness that energy and attention by convincing stakeholders that greater impact can be achieved by acting collectively than by acting alone. It is essential to seize this moment.
2. Forge a public-private partnership.
The success of the rapid development of Covid-19 vaccines is attributable to the participation and cooperation of all major public and private stakeholders. This included government 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 biotechnology companies, clinical research organizations, healthcare systems. health, consulting companies and distributors.
To address cancer disparities, the same kind of comprehensive public-private partnership is needed. It’s important to create the same kind of groundswell and ensure that all key players, including cancer-focused research foundations and philanthropies, feel compelled to be at the table as participants. assets of this partnership.
3. Start with the spine.
While all conditions for collective impact are important, perhaps the most important is the backbone organization that takes the initiative to initiate and drive collective impact. Mark Kramer and Marc Pfitzer define a back-end organization as follows:
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, advancing policies and mobilizing resources. These activities can be managed by a single organization or distributed among several organizations with different skills. The back-end function ensures that all workgroups stay aligned and informed.
In our work on the keys to success in accelerating the development of cures for diseases, we have repeatedly found that an organization that provides strong leadership is essential. This was the case with the development of Covid-19 vaccines, where Operation Warp Speed showed leadership in bringing together all the key players, as did the Foundation of National Health Institutes (FNIH), which piloted the public-private partnership Accelerating therapeutic interventions and vaccines against Covid-19 (ENABLED).
Collective impact to reduce disparities requires equally strong and effective leadership from a central organization with the trust, credibility, experience and seriousness to bring together all the key players who care about disparities: government entities, such as the NIH, FDA, and US Department of Veterans Affairs (VA); pharmaceutical and biotechnology companies; research organizations; academic medical centers and health systems; other community health organizations; and the foundations of disease. The backbone could be, for example, the FNIH, which has experience in conducting public-private partnerships. It can also be a respected private sector organization or several organizations. The central organization would take the lead in bringing all the players together, setting the agenda for the partnership and gaining their support.
By acting with urgency, bringing together a broad, inclusive public-private partnership, and having a credible umbrella organization to take the lead, it is possible to launch an effort that is sustainable, scalable, and can make a long-term difference in reducing cancer disparities.
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, set standards and parameters, secure funding (with government and private sector contributions), and decide on the best way to allocate this 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. Stakeholders could determine the types of data related to disparities at clinical trial sites to collect (e.g., catchment area, staff, funding, leadership) in order to assess the ability of sites to conduct trials. Additionally, at sites where trials are being conducted, the learning system can collect data to measure each site’s performance in recruiting diverse patients and administering trials efficiently.
Data can come from several sources, including the sites themselves, researchers, pharmaceutical companies, clinical research organizations (CROs), and consulting firms. In addition to data, sites and different stakeholders can share information on best practices and lessons learned in selecting sites, improving patient diversity in trials, and conducting trials with populations efficiently. various.
We envision that this and other initiatives would be collectively funded by the public-private partnership participants, including the federal government (perhaps as part of the Cancer Moonshot), pharmaceutical companies, and other ecosystem players. such as disease foundations and philanthropy. . In this way, participants contribute data and funding, and stakeholders can then access the database and learning system to review 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 lower, and it will happen faster.
The end result of this work will be a greater diversity of patients in cancer trials and better knowledge that the treatments that are being developed and tested will work for all patients. This is just one example of how to accelerate healings and reduce disparities through collective impact.
Now is the time to act collectively to make it a reality.