What It Takes to Lead a Disease Research Foundation

Nicola Mendelsohn, an accomplished advertising industry executive who leads Facebook in Europe. Lynn O’Connor Vos, a pediatric-nurse-turned-communications guru. Michael Milken, a financier with a penchant for philanthropy. What do they have in common? They’re leading progress towards curing very specific diseases: follicular lymphoma, muscular dystrophy, and prostate cancer.

At the Harvard Business School Kraft Precision Medicine Accelerator, our mission is to identify ways to accelerate efforts to find cures. Over the past four years, we’ve studied cure-seeking organizations and identified that a group’s success hinges on three critical success factors: the development of a comprehensive strategy, the establishment of the right leader and leadership team, and the deployment of a sustainable funding model.

In a previous HBR piece, we talked strategy, articulating the challenges that cure-seeking organizations face and how to build a plan to overcome those obstacles. But to bring your strategy from ideation into reality, you need the right leader (or leadership team) who can execute the strategy and drive results.

Across the entire nonprofit sector, more than 80% of organizations struggle with leadership. Leading an organization toward breakthroughs — and eventually, cures — is even more difficult. Often, cure-seeking organizations are founded by the people with the most pressing needs for progress: patients and their loved ones. But while passion and urgency are important, leaders must understand the complex health care system and have strong business acumen in order to accelerate progress. They must also be able to work within an ecosystem that is vast and growing — one that includes clinicians, researchers, payers, data scientists, technologists, patient advocates and more.

That’s a lot to ask of one person or a small team, and it’s why so many organizations grapple with having the right leadership. By observing a broad array of leaders, we’ve seen where some fall short and have identified three key consistent approaches that successful leaders follow that allow them to accelerate cures.

1. Live the strategy. Leaders must guide the organization in deciding on the strategy, prioritize and resource the strategy, relentlessly communicate the strategy, and live the strategy each day.

Living the strategy means using it as the basis for making decisions and prioritizing key initiatives. Less effective foundation leaders often have difficulty saying “no”; they can be indecisive, seeking to please all stakeholder and donors. More effective leaders keep their eye on the prize of accelerating cures. They realize that not every good idea fits with the organization’s strategy and not every goal can be accomplished simultaneously. Consequently, successful nonprofit leaders determine which programs require immediate focus and are adept at keeping their team concentrated on these goals.

Effective leaders also live the strategy by constantly communicating it — internally and externally. Strategic communication begins within the organization, meaning that the leader ensures the entire team understands the strategic goals and timelines for deliverables. All communication is grounded in strategy.

It’s also crucial for an organization’s leader to communicate the vision and strategy externally — whether through meetings, speaking engagements, public relations, or social media. Conferences such as the J.P. Morgan Healthcare Conference and the Milken Institute’s’ Future of Health Summit convene many of the most successful organizations in one place, which provides a platform for leaders to network, share their missions, and lay the groundwork for future partnerships and investments.

2. Surround yourself with experts. Most leaders of cure-seeking foundations realize that their foundation acting alone will not produce a cure. A cure will only be developed by orchestrating a focused ecosystem. Less effective leaders try to have the organization do too much internally, don’t engage the right experts or partners, and don’t precisely define each player’s scope of work. In contrast, effective leaders define the experts and partners the organization needs and engage in thorough due diligence and careful contracting to choose the right partners and put proper incentives in place.

In creating the right team and ecosystem, the most successful CEOs build a leadership group of experts with diverse skill sets and backgrounds. This includes medical, data and technology, fundraising, and marketing and communication experts. But since hiring the right talent can be challenging for revenue-constrained organizations, leaders must find creative ways to engage outside experts their organizations need. These outside experts include:

A well-designed advisory board. As you’d expect, the most effective advisory boards we’ve observed have members who are medical and scientific experts. But they also include business leaders and technologists who can advise on a broader array of issues such as optimal clinical-trial design, the best ways to enroll patients, and new funding models. People will be motivated to join such boards when they are well run and when all participants are motivated to cure this specific disease.

Consultants. They can be extremely valuable in strategy development and business planning.

External partners for specific tasks. For example, one leading foundation has outsourced work to a partner focused on science and biopsies, another that pulls data from electronic medical records, and yet another with analytics expertise. This organization has also partnered with a firm for phlebotomy to gather blood samples from patients at their homes and a public relations agency to generate attention around new initiatives. Each partner has been chosen for its expertise in specific area and contracts have been negotiated with great attention to detail. While this may sound obvious to business leaders, nonprofit foundations don’t always use such processes.

3. Stay current and connected to the relevant science. Leaders of disease-focused organizations must constantly be attuned to the entire cure-seeking ecosystem and landscape and to scientific developments related to their specific disease. With science and technology evolving at an increasingly rapid pace, so, too, are new opportunities for innovations and breakthroughs. Some of these innovations happen outside of your immediate disease space; leaders who have a broad view of the landscape will spot opportunities earlier.

For example, recent advancements in gene therapy are showing enormous potential to change the way we treat diseases such as Duchenne muscular dystrophy, cystic fibrosis, and Huntington’s. To be an early mover, a leader must ensure their foundation stays abreast of such advancements by constantly engaging with other organizations that are working towards cures — including academic medical centers, pharmaceutical companies, and technology startups. This will help a leader and his or her foundation assess the potential benefits and risks surrounding such innovations and determine if and when to invest the organization’s resources in supporting it.

For traditional nonprofit foundations, where the main activities are to support patients and engage in advocacy, organizations can be run by good managers with operational and executional skills. But foundations that truly aspire to drive cures require skilled strategic leaders. These bold leaders must be able to develop and articulate a clear strategy, must have the discipline to execute the strategy in a world with numerous distractions, and must be able to form and orchestrate an aligned, collaborative ecosystem with the right experts and partners.

With the right strategy and the leadership, disease-focused foundations give themselves the best possible chance to fulfill their mission and develop life-saving cures for patients.