Creating a Unified Vision: Strategic Planning in Disease Foundations

Creating a Unified Vision: Strategic Planning in Disease Foundations

  • It’s a conundrum. You need to conduct fundraising in order to pay for projects, but you need projects to demonstrate progress in order to raise funds. More precisely, you have to select good initiatives that will provide value for sponsors and donors, so you can encourage those sponsors and donors to fund good initiatives that will provide value.

    Yes, the life of a decision-maker at a disease foundation isn’t easy. But you probably already know that. Chances are, you’ve been in the disease foundation business for many years. Maybe you came out of the pharmaceutical industry or academia, but you’re not brand new to this. You know how hard it can be to generate enthusiasm and encourage people to support your foundation’s ongoing work.

    If you’re like leaders at most foundations, you have a team of somewhere between thirty and fifty people, maybe as many as a hundred. Despite this, it’s still a struggle to get funding and run projects that make a real impact. You have a big vision, and you want to make a big difference—curing disease, easing patient suffering, providing support during diagnosis, whatever it might be. How can you ensure that you’re developing projects that will make progress toward that large-scale vision and also get the funding you need to keep moving toward your foundation’s goal?

    After all, you need to maintain awareness of the impact your foundation is making, so you can continue to engage people on the importance of the work you’re doing. This rarely happens by chance. Even a hard-working team with a clear vision can struggle to achieve it. Plans fail. Results are disappointing. Donors and sponsors are underwhelmed. Stakeholders feel underappreciated and ignored. In the end, excitement wanes, and funding plummets. That’s the death spiral for any disease foundation.

    So, what’s missing? If hard work and a meaningful goal aren’t enough, what do you need in order to continue providing value, making progress, and engaging sponsors and donors to support future projects?

    One thing: effective strategic planning.

    The Benefits of Good Strategic Planning

    Good strategic planning enables you to give a clear, compelling answer when donors ask the all-important question, “What are we supporting?” This is easier said than done, however, because a good strategic plan has to incorporate input from multiple stakeholders. After all, in the life sciences as a whole, there are numerous stakeholders whose perspective matters.

    We can place these stakeholders into five distinct categories.

    First, there are the patients. As the ones receiving treatment, the importance of their input is obvious. They have the biggest stake in the outcome. Now more so than ever their voices is at the center of the whole life sciences ecosystem.

    Second, there are clinicians. They are important decision makers. They are also the ones that help organize care and thereby have an important role in assuring that patient get the specialized care they deserve.

    Third, there are researchers. This includes both industry and academia. These are the stakeholders with the biggest interest in developing new ways to diagnose, manage, and treat disease. Its safe to say there are almost no diseases where there is no need for better ways to diagnose, manage, and treat individuals who are suffering with the disease.

    Fourth, there are the payers, such as insurance companies or the government.

    Fifth are regulators. Most innovations must in some way or form convince regulators. And the more innovative, therefore more impactful, a new way of management disease is, the more important it is to engage regulators and have the whole disease community behind your ideas.

    Whatever the case, bringing all of these stakeholders together and getting input from them can be difficult. It involves facilitating meetings that are meaningful for them and for you.

    Somehow, all of your stakeholders (patients, clinicians, researchers, payers and regulators) need to be heard. They want to feel like their input matters. Indeed, if you can’t make progress in a way that matters to each of them, the impact of your projects will be diminished.

    Imagine the impact of a clinician saying, “They’re spending a lot of money, but they’ve totally ignored my concerns.” Worse yet, imagine the damage that’s done when patients say, “All of this research hasn’t made much difference. They don’t even listen to us.”

    When the public perceives that you’re not delivering value to stakeholders, then you’re going to lose both funding and influence in the community.


    Our goals can only be reached through the vehicle of a plan. There is no other route to success.

                                                        - Pablo Picasso


    So, how can you make sure that your strategic planning is effective? Above all, remember that it all boils down to one ultimate goal: making a difference in the lives of individuals suffering from disease. Without funding, nothing happens, right? However, to continue to raise funding, you have to make sure you’re consistently delivering on the right projects—projects that make an impact and demonstrate the value of the work you’re doing as a foundation—for every stakeholder.

    To do that, you need a strategy that includes input from every stakeholder group. Make sure you’re gathering enough input. Many strategic plans fail because they simply didn’t have a clear enough perspective from each of the relevant stakeholder groups.

    While it’s important to talk to stakeholders individually, we also believe in bringing them all together for a series of participatory design sessions. There’s something powerful about the group dynamic. Creativity emerges as people begin building on each other’s ideas. As they listen to each other, it stimulates their thinking and they come up with things they never would have thought of on their own.

    However, to get them to that point, you have to create an environment in a meeting, online or in person, where attendees feel safe to express their opinion. This is where an expert facilitator can help.


    Divergent and convergent thinking

    Figure 1: The process of divergent and convergent thinking that can be used to harness the collective creativity that emerges when different types of stakeholders think together


    When you have a process in place for getting multi-stakeholder input, you build enthusiasm because you show stakeholders that you’re listening to them and you care about what’s important to them. People leave meetings energized and enthusiastic, confident that the organization is doing things the right way.

    Nothing is more deflating to stakeholders than the sense that they aren’t being listened to, so if you can come up with the plan that touches on what matters to each group, you will end up with a core of committed people who feel valued. In turn, they will become big fans of what your organization is doing.

    When Strategic Planning Goes Wrong

    Unfortunately, there are some common mistakes disease foundations make when they bring multiple stakeholders together. Chiefly, when you bring together multiple stakeholders, all of them might have different ideas about what needs to be done. Trying to address the needs and concerns of every stakeholder will inevitably require a lot more funding.

    It’s easy to get into this situation. You want every stakeholder to feel valued, so you bring together all of the input you’ve received and try to address all of their concerns. It’s well-intentioned but dangerous. Most disease foundations have limited budgets, so if stakeholders want to do a lot of different things, you need some process for identifying where to prioritize.

    Remember, each stakeholder has their own agenda, and they all want something different. If you don’t plan well, you’re going to be overwhelmed.

    We recommend taking all of that input and thinking strategically (and creatively) about how you can develop projects that somehow touch upon multiple stakeholders without doing more than your foundation’s budget can handle. A good strategic plan that creates touchpoints with every stakeholder allows you to respond with confidence, “Yes, that’s part of our plan. We’re going to deliver that.”

    At the same time, you also need to meet multiple stakeholder concerns without developing projects that are too broadly focused. How do you know if your project is too broadly focused? Here’s a little test. Can it be expressed in just a couple of sentences? If not, then you may be in trouble.

    Narrow your focus. Deliver projects that can be described concisely (a sentence or two are ideal). That way, they will be more compelling, easier to promote, and more likely to make demonstrable progress.


    The essence of strategy is choosing what not to do.

                                         - Michael Porter


    This can be quite tricky, however, because you still have to find connections between different stakeholders within that narrow focus. It will help if you get each stakeholder to think collectively rather than independently. To do that, try to contextualize all of the input around a central goal. This requires knowledge about life sciences and healthcare. Again, an outside facilitator can help by narrowing the focus of your strategic plan to ensure it meets stakeholder demands while also fitting within your budget.


    Focusing concepts for strategic planning

    Figure 2: Focusing concepts for a strategic plan and what they help you achieve Watch VIDEO for more explanation

    But keeping stakeholders happy isn’t the only challenge that you have to overcome. There are also all of the other disease foundations out there in the community. Are you competing with them for funding and influence, or are you working with them to achieve similar goals? Often, leaders try to do a little bit of both.

    A good strategic plan, however, helps you figure out the best way to work with other organizations while also positioning your own foundation well. Walking this balance, without falling into competition or generating ill-will with like-minded foundations requires good decision-making and careful allocation of resources.

    The Time is Right to Make a Difference

    The good news is there’s never been a better time to get your strategic planning right. In recent years, we’ve seen a growing interest in patient-stakeholder engagement, as well as a growing demand for real-world data from patients outside of clinical studies. Disease foundations are well-positioned to acquire and coordinate that kind of data, especially registry data provided by patients through signing up and sharing their data voluntarily.

    There has also been a push toward discovering and validating the biomarkers needed for precision medicine in order to deliver better drug therapies. Doing that requires bringing together data from multiple sources, and again, disease foundations can play a pivotal role here by motivating individual sources to deliver their data. Increasingly, as pointed out in a New England Journal of Medicine article, academia, industry and disease foundations are collaborating, bringing together a wider array of data in order to reduce the amount of time it takes to get FDA approval for new drug therapies.  

    So, if you can get your strategic planning right, if you can narrow your focus, bring together the input from multiple stakeholders, and get them to think collectively, you can play a pivotal role in delivering better therapies. This, in turn, will generate tremendous awareness for your organization.

    Remember, poor strategic planning is a source of frustration not only for decision-makers in the organization but for everyone around them—including donors. When you fail to plan well, the most immediate effect is diminishing enthusiasm and engagement from donors. When they can’t see clear, tangible progress toward a compelling goal, they’re not going to feel motivated to support the work. That will impact future projects, which could put you on that downward spiral.

    Leverage Your Why

    Fortunately, you have one distinct advantage. One of the beautiful things about a disease foundation is that, unlike many other types of organizations, you already have a clear and compelling why. You know why you exist, you know what you’re trying to accomplish, and so do the people around you. However, a clearly defined why won’t do much good if people don’t see you making an impact on it. Without progress, they’re going to disengage.

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    A good strategic plan ensures that you have some kind of metrics and goals you can use to demonstrate the progress you’re making. Think about it: a fundraising drive is a lot more effective when you can say, “Hey, look, we’ve hit these numbers. Here’s a nice graphic showing actual progress.”

    With a good strategic plan, you have everyone working together, moving in the same direction, and donors know what they’re buying into. Everyone is focused on achieving something specific, rather than everyone wandering off and doing their own thing. Similarly, it enables you to set a high, hard goal, something truly ambitious that you really have to stretch for.

    More than that, you can aim for a real moonshot goal while also laying a foundation of smaller goals underneath to support it. When you set a truly ambitious goal, you rally people to give more. For example, let’s say you set a goal of curing cancer within the century. It’s ambitious, but not so wild that it seems impossible, and it provides motivation that people can get behind. Now, all you have to do is create a roadmap of smaller goals so you can begin to chip away at it.

    The size of the overarching goal—this is where many organizational leaders drop the ball. Often, they want to set a goal that seems feasible and shareable, but what they wind up with is just not very compelling. As a result, they leave a lot of potential on the table. We recommend dreaming bigger. Set an big ambitious goal, and then set smaller goals along the way that will keep your organization moving forward and making progress. Then you can define what you need to deliver but also include goals that your stakeholders care about.

    Case Study: Creating a Compelling Plan

    So, what does this look like in practice? Recently, we worked with an organization that wanted help renewing their strategic plan. Specifically, they were struggling to figure out how to incorporate multiple stakeholders. They knew they needed more patient input to give them a better perspective on the disease and create a more compelling vision for stakeholders to rally around, but gathering and incorporating that input proved difficult.

    We met with their executive team to discuss what they needed to do. From that meeting, we crafted a process that involved meeting with different kinds of stakeholders to discuss what each of them saw as the primary problems and sources of disorganization. Then we discussed with each stakeholder group what they thought the organization could do better.

    Once we had all of this information and feedback, we consolidated it, along with our own knowledge and advice, and mapped out the problems visually, creating a nice Venn diagram that revealed the strengths, weaknesses, opportunities, and threats. From there, we created a list of possible strategic initiatives the organization might take, and under each of them was a high, hard goal for that initiative.

    Then we went to their steering committee and presented it to them. They provided some input. Afterward, we had a second round of calls that included the key stakeholders of the organization, and we asked them a series of focusing questions. The intent was to help them develop a common strategy that all of their people and their stakeholders could rally around.

    In the end, it was the ability to focus that helped them bring all of their stakeholder input together, which, in turn, gave them insights and ideas they hadn’t thought about. Stakeholders became energized because they felt valued and listened to. With their renewed plan, the foundation has started to make progress with greater clarity, better decision-making ability, using unified input without silos.

    • "BioSci Consulting helped us bring together multi-stakeholder input that was then used to further develop and focus our strategic plan. Their ability to serve as an informed, neutral moderator, and to facilitate the interactions with different stakeholder groups was extremely valuable to our efforts. Not only did we gain significant insight and uncover new ideas, the effort also increased the enthusiasm of the stakeholders. The stakeholder groups appreciated our efforts to get their feedback. The depth of knowledge of BioSci Consulting relating to health research and innovation helped to identify new strategic opportunities that we would otherwise have missed. I highly recommend the engagement of BioSci Consulting in the development of your next strategic plan."

      Bill Schmidt | President and Chief Executive Officer
      Pulmonary Fibrosis Foundation

    Unify Stakeholders, Inspire Your Donors

    In the end, a good great strategic plan

    • 1) is aligned around an ambitious goal,

    • 2) includes input from all relevant stakeholders,

    • 3) touches on things that every stakeholder cares about while maintaining focus, and

    • 4) sets smaller goals along the way that provide tangible proof of ongoing progress.

  • If your plan can achieve these four things, then you will generate excitement, increased engagement, and have the focus you need to unify your team and all stakeholder groups toward that single purpose.

    Perhaps the most difficult part of this process is collecting input from all stakeholders. Rather than getting bogged down at this point, we recommend using an outside facilitator who can bring stakeholders together to develop a group dynamic that you can use not only to learn what is most important, but also to build enthusiasm in your stakeholder community.

    Exceeding expectations

    If you’re ready to update an existing strategic plan or new one for your disease foundation get in touch. We’d be happy to speak with you about how you can leverage multi-stakeholder input to develop a strategic plan that exceeds your, and your board’s expectations. Contact us here

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