What is Partnering for Cures?
The seventh Partnering for Cures conference was held on November 1-3rd 2015 in New York. This annual meeting from the team at FasterCures – an American think tank and a centre of the Milken Institute – brought together 800 participants from all corners of biomedical research. The aim of the meeting was to ‘do exactly what it says’ – to partner and collaborate to accelerate medical research and bring cures for patients sooner.
Partnering for Cures arrives at an incredibly important time for medical research and for patients. We’re moving on from our traditional ways of working and beginning to forge new alliances to shape the landscape and make the voice of patients heard louder than ever before. Our Essential Partnership – a guide for charities collaborating with industry – really shows off the advances that charities are making. From new, innovative ways of funding, to working in consortia with industry and academia, charities are investing to maximise the impact of their research. But this is only the start and we have some pretty big hurdles to jump.
What were the main themes?
Among the many different topics and discussions, here’s a summary of the main themes discussed at the meeting:
The overriding theme of the conference was the importance of putting the patient voice at the heart of research. This really is crucial if we are to deliver ‘faster cures’.
We should think of patients as partners, not bystanders. Patients can tell us more about their disease or condition so it’s high time we listen to them to really understand their perspectives
We heard about the challenges in understanding what patients value the most, alongside their preferences, adherence to treatments and the risks they are prepared to take. It was clear that this differs depending on the disease and its severity but these priorities need to be at the heart of patient-centered research – we mustn’t forget ask patients – “what’s wrong?” We also heard about the Food and Drugs Administration patient panels, which seem similar to those of the European Medicines Agency. This is great to see and is another example showcasing that patients can be represented throughout all stages of research.
We also heard that industry want to engage with patients to understand the patient experience of disease. But they need help in translating the ‘experience’ into clean, reliable, relevant data that is statistically significant both to them and to regulators. With charities having direct access to patient populations, this seems like an ideal opportunity for us to take a lead.
For more information on the patient voice in research, watch the video from the conference.
We heard from Dr Francis Collins, Director of the National Institutes of Health who unveiled an initiative to recruit one million Americans into a longitudinal cohort of the Precision Medicine Initiative. Recruitment starts next year and patients will be asked to provide biological samples, as well as behavioural and environmental data collected through questionnaires and wearable sensors. This study aims to increase understanding of disease in the context of a healthy control population. The data generated from such a study will be enormous but technology has moved on to allow this to become a reality.
We also heard about the importance of understanding how to deliver the right treatment to the right patient at the right time to have the right effect. This involves marrying up good quality genotypic information with phenotypic data. As one panel member put it:
Medicine should be more like Netflix – it knows your viewing choices, so why can we use health data to predict treatments?
Another panellist commented on how we need to change the way that we ‘see’ data. Data are not just generated in a lab or from filling in a questionnaire. Each day, we generate more data across our day-to-day activities than our doctors see in a whole year. Add to this, the dramatic upsurge in use of medical apps (44 million were downloaded last year; this is predicted to more than triple by the end of 2016) and the potential to generate data for research is huge. But if we are to make progress in understanding and treating disease, we need to become smarter in the way we collect, store and analyse data.
We also heard that patients should be able to access their information. In America, they have the ‘Blue Button’ initiative – a collaborative effort involving the Veterans Administration, the US government and more than 450 organisations in the US, to allow patients to access personal health information so they can view, download and share their data with any healthcare provider, hospital, pharmacy or other data holder. Giving patients control of their data and how they use it seems an obvious solution to many of the issues we face in the UK. Trust is however, an important issue, and it’s critical that patients trust researchers with their data.
The US seems to be ahead of the curve in their thinking around venture philanthropy and many organisations are considering such models to fund innovative research. Venture philanthropy involves awarding funding as a business agreement rather than a traditional research grant. We heard about the challenges in setting up such a fund – particularly around the fact that these projects are performance based where payment is awarded on a defined set of agreements with clearly accountable go/no-go decisions. Venture funds backed by investors are also looking for a return on their funds – normally in the region of 8-10%, dependent on the risks involved. Considering this, alongside the fact that investments tend to be for longer period makes for a very different looking process than the traditional response-mode grant.
For more information – watch the video from the conference! AMRC will be helping our members interested in setting up such a fund, and we will be discussing it at our November conference – watch this space!
We all know that research and development is expensive and takes a long time. But what can we do to tackle the problems head on? Here is a list of some thoughts and ideas collected (the full video is available here):
Between 96-99% of discovery research does not make to through latter stages of development. We need continual investment in basic science to improve failure rates. This involves creating better models to understand disease but also to consider how they translate to ecosystem of the human body. We should be asking ourselves – “if something can’t be reproduced – is this because the science isn’t accurate or because the model only works for a specific subset of disease?”
Using big data and mapping of data from different sources – biological (including genotypic), environmental and personal data generated from medical apps and sensors will be crucial to gain a broader understanding of disease. These data need to curated properly. Can we learn from organisations such as Google or Amazon as to how they clean and store it?
Can we change how clinical trials are designed in light of the fact that patients are living longer and that diseases are now stratified into many subtypes? If we collect rich information sources about the participants, can we more accurately predict outcome? – And would this mean we could use smaller patients numbers involved in trials?
We need to capitalise on new discoveries – for instance in cancer, the use of the immune system to target the disease rather than using cancer-busting drugs.
We need to tackle the issues with reproducibility of research head on and change the culture from competitiveness to collaborative, ensuring that we reward excellent science. Would universities be prepared to give a “money-back” guarantee if data from an experiment couldn’t be replicated? Can we learn from the ways industry assesses reproducibility before investing in a potential product?
We should work in cross-disciplinary groups involving mathematicians, physicians, information technology, even cyber and virtual reality experts!
It’s important to develop a clearer and more realistic attitude to risk. If we are to accelerate drug development, this will involve taking more risk. Patients should have the freedom to take risks that others might not wish to – but they should be consulted, and well informed.
By bringing together such a diverse group of participants – researchers, patients, charities and foundations, industry, regulators and health care providers – all with the same aims and interests, Partnering for Cures afforded us with a huge opportunity to listen, learn and to get the patient voice heard. This is crucial if we are to truly speed up drug discovery and development and drive patient-centered outcomes. AMRC hopes to continue working with the team at FasterCures going forwards. If anyone would like to know more about the meeting, please contact Andy.
I wanted to end by sharing this glorious photo of Team GB!
Left to right – Janet Allen, Cystic Fibrosis Trust; Andy Clempson, AMRC; Helen Matthews, The Cure Parkinson’s Trust; Carol Bewick, Fight for Sight; Victoria Taylor, British Heart Foundation; Anna Obolensky, British Heart Foundation; Aisling Burnand, AMRC; and Steven Simpson, Arthritis Research UK.
– See more at: http://www.amrc.org.uk/blog/partnering-for-cures-2015#sthash.QhM1klWW.dpuf