Re: Disease research update
- In discussing different models of research funding (NIH vs. corporations vs. small startups vs. funding through charities) I thought it might be useful to point out the partnership between GlaxoSmithKline and the Gates Foundation at Tres Cantos:
Basically, it's my understanding that the Gates Foundation has helped fund this GSK lab (Tres Cantos) in Spain for the purpose of malaria research, but in exchange has demanded that the lab make its findings public. This appears to be a new idea; researchers tend to be very secretive about their work, just like charities!
Sounds like a step in the right direction.
This is an update on what we've learned since our previous update (http://groups.yahoo.com/group/givewell/message/182) and what our plans are going forward.
In the last month or so we've made progress to answering the following questions, primarily through conversations with FasterCures (http://fastercures.org/) about their Philanthropy Advisory Service (http://www.philanthropyadvisoryservice.org/), Chris Lipinski (http://myprofile.cos.com/lipinskica) and John Overington (http://www.nature.com/nrd/journal/v5/n12/authors/nrd2199.html). Notes from our conversations with Drs. Lipinski and Overington are available on the GiveWell website at http://www.givewell.org/node/1339
- What can we know about total funding allocated to each disease? The NIH publishes funding by disease, but we don't have a way of getting funds invested by other parties (i.e., for-profit industry). We've found a PLoS paper (http://www.plosone.org/article/info:doi/10.1371/journal.pone.0007015) that shows total (industry + government + non-profit) funding by broad area (e.g., neuroscience, oncology, cardiovascular) but not by specific disease. John Overington (see below) told us that he does not believe that industry funding by disease is available.
- What are the possibilities we have available for assessing an organization's track record? Both John Overington and Chris Lipinski thought that assessing an organization's publication/citation record would be reasonable. Dr. Lipinski suggested that instead of doing citation/publication analysis for all of an organization's papers, we instead identify the most important/influentual papers in each disease (by seeing which papers are cited in major literature reviews) and see who funded them. Dr. Overington suggested we also look at patents an organization had received (on the notion that a patent implies that the organization created something describable and worth protecting).
- What are the possibilities available for assessing the likelihood of a particular organization developing a new drug or treatment? Dr. Overington's company "scores" company's/organization's pipelines on the likelihood that they will produce effective treatments. He said that his company works on a case by case basis and that a general assessment of "would this approach work" does not exist.
- Are there particular approaches to research that have been successful/not successful? Chris Lipinski said that there's a consensus that academic biology is good for basic science but doesn't translate well at all into outcomes for patients. Until recently NIH had a poor track record in the translation of basic research into real drug discovery. Recently, he says that the NIH appreciates the problem of the translational medicine gap and has for a number of years made a good faith effort to address this gap. Dr. Lipinski mentioned the approach of drug repurposing/repositioning, taking existing drugs and testing whether they can successfully treat other conditions.
- Are there existing reports on disease research organizations that will point us to potentially outstanding charities? The FasterCures PAS reports have a lot of useful information (and are among the meatiest sources of information on charities I've seen), but they don't answer all of our questions. (We have asked FasterCures to refer us to the advisors they consulted in creating these reports, so we could ask them our remaining questions.) The MS Society (the organization we use for the examples below) declined to speak with us and told us to rely on the FasterCures report. Examples of FasterCures' report statements and our remaining questions:
- According to the FasterCures report, a key accomplishment for the National MS Society is "Contributing to research that resulted in the six disease-modifying drugs approved by the U.S. Food and Drug Administration (FDA) and research that contributed to the development of the current therapeutic pipeline." We still would ask, in what way, specifically, did the MS Society contribute to the development of these drugs? What other organizations/entities contributed to the development of these drugs and what role did they play?
- FasterCures states, "PAS’s scientific advisors point out that it has been the single organization serving as a catalyst for new research in MS." We ask, what do the advisors base this conclusion on? What does it mean to be "the catalyst" and what would have happened in the Society's absence?
- FasterCures states, "The Society is a key source of new knowledge about MS. Internal tracking of publications of its grantees indicates that a typical grant results in 4-6 publications, and that in 2008, research grants resulted in 240 publications." We still would ask, what was the impact of their publications? Were any publications extremely influential? Were they published in top journals? What was their citation record?
Our plan going forward
Learning the answers to the above questions have caused us to re-evaluate our approach. We think it's unlikely that independent research / scanning charities' websites will enable us to find organizations we can recommend.
Our plan now is to:
- Narrow our scope and focus primarily (for now) on two diseases covered by FasterCures Philanthropy Advisory Service (discussed above): malaria and multiple sclerosis. The goal is to get a sense for what is possible by focusing on diseases for which a lot of information is likely to be available.
- Identify relevant people with knowledge about ongoing research in those areas and speak with them about what future research might accomplish and what benefit additional funding would yield. Also, look at papers on malaria and MS in Nature Reviews Drug Discovery to see what the most important papers have been and who has funded them. The idea is to produce some content on (a) the relative merits of funding work in the two different areas; (b) the relative merits of different organizations with each area. If this approach goes well we can potentially apply it to other diseases as well.
- Talk to funders (e.g., Gates Foundation, Wellcome Turst) about how they choose which organizations to support.
- Try to determine which researchers in different fields are "top" vs "average" vs "below average" and talk to them about their funding needs, with the aim of determine whether (a) "top" have all the funding they need and marginal funding goes to "below average" researchers or (b) "top" researchers can use additional funds.