The Problem with How Cure Progress is Measured
Last week, the JDCA put out it’s newest, shortest, and possibly most surprising report to date: How Do Non-Profits Measure Cure Progress? We contacted the high-ups of the four charities to find out what ( if any) measures are used as indicators of cure progress. The results are illuminating, and show exactly why progress has been so slow to come.
So just what do non-profits measure themselves by? Unfortunately, nothing that has any tangible effect on cure progress. The three main areas include: expanding the general diabetes knowledge base, publishing reports in scientific journals, and attracting new talent. While the importance of each varies depending on the charity, these are the major guideposts they use.
Clearly, none of these are good indicators of how close we are to curing this disease, or if research is progressing in the right direction. In fact, looking at these three measurements, it’s quite clear how many research areas could be flawed in their approach. If a major goal is to gain new talent, could many promising projects get dropped in the effort to have a portfolio that looks more attractive to scientists? If publishing reports is a major goal, than will we wind up conducting research in a different manner than if we were solely trying to get rid of this disease?
I suggest you read the report ( at one and a half pages, it’s the shortest we’ve ever done) to get some of the finer details. Do you disagree with these measurements? Do you think this system needs to change? If so, sign up for the Alliance and show your resolve for a Practical Cure. Only by banning together can we cut through the oversights that are crippling true progress to a cure, and your simple show of support is the first step in that direction.
We’ll soon be using the Alliance soon for bigger things, and if you’re serious about a Practical Cure, you’ll want to be a part of it.
Until Next Time
–Nick
To me a cure means gone, eradicated, as if it never existed.
I agree those measurements are not particularly useful. However, I can’t think of anything that WOULD be useful. Except at the highest levels, many of the “steps” in developing a cure are predicated on the results of prior steps, so to create a timeline from start-to-finish with specific milestones could be quite restrictive.
That said, putting a timeline approach could also lead to steps backwards. To test something and to have it fail (or, to put it more lightly, not work as well as expected) would mean going backwards, which would undoubtedly tick off existing donors and discourage new ones. By keeping the milestones vague, there are no backwards steps.
I’m not saying the way they do it is the right way, but I can see why they do it.
Hey Scott,
I agree, and it makes sense why they do it. It allows them to commit to research in various areas, while not really getting into hot water if anything doesn’t work out.
As for steps backwards if they put in a timeline, while it would anger and dishearten donors, from our perspective, it’s better know sooner what roads are going to be dead ends to help focus on avenues that could produce the desired results.
I clicked to read the report, expecting to see the individual responses from each of the organizations you’d contacted. I was disappointed to not see that, but instead your summary of what they apparently relayed. I agree with Scott’s comment above, that putting a timeline on a cure – however you decide to define it – is dangerous and leads to steps backwards. That’s what happened for 35 years with the JDF-turned-JDRF. Until they actually figured out that “hey, we don’t have a clue what we’re even looking for, so we need to learn more before we can even begin to understand what a road to the cure might be like. And long before we can say it’s coming at any particular time.” That, in itself, was invaluable. And the line you have in the report: Learning everything there is to know about type 1 may eventually lead to a cure, but this approach is very unlikely to cure individuals who are now living with type 1.” WOW. What an incredibly short-sighted philosophy. In your eyes, it seems like the answer is to just throw our best bets into a hat and keep fishing around for an answer. Even if we never get there. Rather than actually looking at the full picture and learning what it is we’re trying to do. Amazing.
Mike,
So I understand some of this thinking. For instance, we do know that in the past, sprinting towards a cure and promising a major breakthrough (the JDRF’s decade of a cure for instance) has been disastrous, leading to public outcry and scientific blunder.
However, the measurements chosen, even if you don’t believe pushing for a cure above all else, don’t really make sense. You could get your research in many scientific journals in a year, but that’s not necessarily a good indicator of progress on any front. You did research, now what do you use it for? How does it connect to your other projects? Etc…
Regarding your last comment about all this research “not helping those who now have type 1″, I understand how you see that as a short-sighted response. If our goal was to make it so that nothing else in the world was researched except things that might help those today, that’d be a problem. But that’s not our stance. None of the other research initiatives should be completely eliminated, but more money should be funded into cure projects. Things like Faustman’s research, which, if it works as planned, could help diabetics now living with T1, should not have to fight to get funded above other research.