Our most recent report rated the major diabetes non-profits on the quality of their communication with donors about 4 topics: financial data, enterprise governance, strategic direction, and cure progress. This blog post will go over some primary reasons why these topics matter to the pursuit of a cure for type 1 diabetes, and why donors who are seeking a cure should have better access to information on these topics.
In our last blog post, we gave a snapshot of the JDCA’s corporate governance ratings for each of the 4 non-profits and the industry as a whole. To come up with these ratings, we broke the 4 major topics into 22 subtopics, which we scored based on transparency, consistency, timeliness, and thoroughness of information. To see them, click on our ratings template below:
So how does having sufficient information on these topics relate to the cure that we all want to see in our lifetimes? Let’s consider some examples.
Our last post talked about the “Financial Data” subtopics “Financial statements” and “Supporting discussion and analysis.” “Research grants” also falls under the “Financial Data” category. When donors give money to the non-profits with the goal of fueling a type 1 cure, they want their donation to go to research that is working on a cure. Not just idealized research that might lead to a cure in a hundred years from now, but research that has real potential to deliver a cure-like lifestyle to those of us and our family members and friends who are living with diabetes today. This crosses over into the “Cure Progress” subtopics “Spending on type 1 cure research” and “Areas of type 1 cure research funding.” It is not enough for a non-profit to assure its stakeholders that donations go to fund “cure research.” The non-profit needs to disclose to their donors what specific research grants they are funding, what the goal of each research project is, and how much money it receives. That way the donors can have confidence that they are supporting the kind of research they think they are.
A quantitative and qualitative description of research grant allocations would also allow donors to see how the non-profits prioritize cure research relative to other projects, which brings us to the “Strategic Direction” category. The non-profits receive high marks for “Mission statement provided.” Mission statements give a broad idea of what the organization was set up to achieve, but, “what are near-term specific goals and objectives” of the organization? Donors should be informed about the organization’s goals and how it plans to reach them in more detail than the mission statement provides. This is true in terms of the organizations’ research work, as well as their fundraising goals and activities, their education and outreach goals and activities, their advocacy goals and activities, etc.
But for those of us who give to the non-profits because we want to bring about a cure for type 1, it is most critically important to be able to monitor the non-profits’ “Cure Progress.” To be assured of the “Creation of short-term cure research goals/milestones” is to see that the non-profit has laid out a clear path to get to a cure with specific stepping stones to keep them on track and mark their progress. With a clearly charted course to a cure, it is easier to see when the non-profit stumbles or starts to veer off course, as well as to mark the milestones that they hit along the way. That is why we have the “Cure Progress” subtopic “Discussion and analysis of achievements/shortfalls.” The organizations should not just trumpet their accomplishments. They ought to also disclose what they have tried that has not worked out so well, what they have learned from those shortfalls, and how they will use that knowledge to reevaluate and fine tune their strategy for getting to the cure goal that they set out. As anyone with type 1 knows, recognizing, evaluating, and changing what is not working for you is crucial to making progress toward your goal. To do so does not mean that you are a failure, but that you are doing what is necessary to thrive and claiming responsibility for the direction you choose to follow.
Finally, we end on the “Enterprise Governance” category. The leadership of the non-profits are the ones who do the planning and prioritizing and mapmaking that we have been talking about. They are the ones who decide how to spend their stakeholders’ donation dollars. They are the ones who decide whether to increase or decrease the amount of funding for cure research, and which cure projects get funding. But who are they? What motivates their decisions and how they prioritize cure work relative to the non-profit’s other work? Answering these questions requires information about ”Board committee composition” and “Board member and executive officer biographies,” as well as “Outside party relationships” and “Incentive pay/policy.” These are topics that the JDCA will take up in a forthcoming report about management’s incentives to deliver a cure.
-Kathryn
