One notable quirk of the British life sciences ecosystem is the importance of its not-for-profit sector. Indeed, in 2017, UK charities poured GBP 1.6 billion (USD 2.1 billion) into medical research; more than both the Medical Research Council (MRC) and the National Institute for Health Research (NIHR). Simon Gillespie, chief executive of the British Heart Foundation (BHF) – which each year commits GBP 100m to new research – points out that the importance of charities in the UK is deeply embedded: “The UK has a very long history and tradition in supporting charities. Famously, the first piece of charity legislation was the Statute of Elizabeth in 1601, so it is quite old as a legal concept.”
In the UK, when people want to help those affected by diseases like Alzheimer’s, they often go to charities rather than the state
Hilary Evans, ARUK
On the enduring success of the British charity model, Hilary Evans, chief executive of Alzheimer’s Research UK (ARUK), notes that, “In the UK, when people want to help those affected by diseases like Alzheimer’s, they often go to charities rather than the state. They want to be involved in something and surround themselves with other people with the same mind-set.” Evans strongly feels that medical research charities fill a gap left by both the state and industry. “I don’t think there is a risk in leaving public health issues to the will of the people and donors,” she postulates. “It allows you to raise a huge amount of money to do things a little differently. I don’t think any government would do some of the things we’ve done, which have been very successful. We aren’t politically driven as any government funding would be, which allows us more freedom to be innovative.”
British research charities do not, however, exist in a bubble and can play a vital role in the research efforts of both industry and government. Aisling Burnand, CEO of the Association of Medical Research Charities (AMRC), posits that, “charity investment has a significant impact in its role as a lever that de-risks a particular area of research and opens it up for further funding.” She continues, “In many cases, charities identify an unmet patient need, where no one else is operating in that space, and then enter early on. That funding then de-risks the early-stage research, allowing other actors to come in. Sometimes it works the other way around and charities might piggyback on public-sector or private funding.”
The Charity-Industry Intersection
One particularly risky area of research is Alzheimer’s Disease. Indeed, the failure rates for Alzheimer’s drugs has been 99.6 percent over the past decade and Pfizer joined a host of other Big Pharma companies by quitting Alzheimer’s research in January 2018 in favor of surer bets in cancer and cardiology. ARUK’s Evans therefore feels her organization has an important role to play in keeping the disease on researchers’ priority lists. She notes that, “We launched our ‘Defeat Dementia’ Campaign in 2014 with the objective of raising GBP 100 million to ramp up ambitions around dementia research. We needed to be much more strategic in terms of how we funded medical research and to work much more closely with government and industry to bring about new treatments.” In another cross-sector collaboration, Evans points out that ARUK is “one of the founding partners of the UK Dementia Research Institute, established in 2016, which will be a UK-wide flagship institute pulling together some of the best scientific research happening across six universities across the UK. It is a jointly funded initiative, with GBP 150m of government funding through the Medical Research Council, GBP 50m from ARUK and another GBP 50m from the Alzheimer’s Society.”
Another charity that has prioritized and formalized its industry collaboration is the Multiple Sclerosis (MS) Society. Its CEO, Michelle Mitchell, is keen to highlight the commonalities between charities working in the MS field and private companies developing treatments. “At a global level we work with the Progressive MS alliance. We have an industry forum and industry partnerships whereby, on a non-competitive basis, we all have something distinctive to contribute to achieving our goal, which is finding new treatments for progressive MS,” she notes. “We see the solution as charities, industry scientists and researchers working together.” Mitchell does though stress the need for transparency in these non-profit/for-profit collaborations, saying that, “it is important that we have the right type of relationship and that our relationship is thoroughly regulated. It has to be transparent and there should be no conflict of interest.”
The BHF’s Simon Gillespie is also cautious about greater industry interaction, noting that, “We have always traditionally had an arm’s-length relationship with industry. We don’t take money from industry and therefore we preserve our independence. In fact, preserving our independence of thinking and that trust from the public is essential to us.” However, Gillespie does acknowledge that the world of medical research is changing and, “Increasingly, as we are moving more into translational medicine and the clinical medicine space, we are bumping more often into industry. The last thing we want to do is get to a situation where we end up detracting from patient benefit. Industry is part of the solution and in the coming years, BHF will be much more public in recognizing that we have to work together.
New Strategies and Charity 2.0
Not only is the charity sector working more with private industry, it is taking its cues from it. As the AMRC’s Burnand notes, “We are now seeing charities behaving more like investors, with Parkinson’s UK and Alzheimer’s Research UK as examples. Such organizations are either putting in money to have more ‘shots at the goal’ by moving into the translational space while they might have historically worked more in the basic research space, or they are acting as ‘honest brokers’ and aligning investment from a variety of partners around an unmet patient need.”
Burnand also highlights charities’ adoption of new investment models, such as integrated funding. “Charities are starting to say things like: ‘we will invest this amount of money, but we would like to recoup a particular level of investment which will then go straight into funding more research,’” she articulates. “At the far end of the spectrum, you have models that work in a similar way to venture capital. Examples include Parkinson’s UK’s Virtual Biotech, the Brain Tumour Charity’s Brain Tumor Fund, and the Dementia Discovery Fund.”
Furthermore, the digitalization wave sweeping across the entire healthcare and life sciences industries has not left charities untouched. The AMRC has coined the innovative digital organizations operating in the charity space, ‘Charity 2.0’ and Burnand describes that, “This is still something relatively new and untested that we are all trying to grapple with, but we are seeing some promising new initiatives. Arthritis Research UK is trialing a chatbox-type technology to deliver tailored information at home and many new ideas were showcased at our ‘Delving into Digital’ conference in February. The conference showcased examples of digital projects including apps and artificial intelligence being developed by AMRC member charities and facilitated links with digital technology companies and public-sector representatives.”
