SXSW: Precision medicine needs to be collaborative

By March 25, 2016
Keywords : e-Health, North-America, SXSW
Les tendances e-santé du SXSW

Among the main e-Health trends discussed at SXSW, one key message is: “Personalised medicine, certainly, but it must be done right” – i.e. based on collaboration between medical practitioners and scientific researchers, involving both the public and private sectors.

The discussions at this year’s South by South West (SXSW) conference, which took place in Austin, Texas last week, encourage us to think of the new technologies as a toolbox designed to serve humanity. And this vision is particularly relevant to health technologies. Since 2015 health has enjoyed a high profile at SXSW. Medical innovations and inventions relating to health in the wider sense have their own area at the event, under the name SX Health & MedTech Expo. This year the space provided a platform for more than 50 health-related presentations and hosted close to a hundred exhibitors, mainly startups.

Dana Abramovitz, who heads the SX Health & Med Tech Expo management team, identified two main areas which were major trends this year: firstly, advances in brain research; and secondly, collaboration between the various players in the sector who are working to shape the medicine of tomorrow.“We’re seeing the emergence of many initiatives relating to the brain and memory, such as for instance technologies being developed to treat paralysis by acting directly on the brain. Moreover, we observe a lot of interaction between the various players in the healthcare industry who want to ensure that the patient’s needs are really being taken into consideration amid this non-stop flow of innovation. It’s great to see the growing sense of team spirit and sharing, a desire to collaborate, break down silos and bring in people with a range of skills, such as designers,”  she stressed.

Dana Abramovitz, directrice du SX Health & MedTech Expo

Dana Abramovitz heads the SX Health & Med Tech Expo management team

Collaboration between different professions

Ms Abramovitz pointed in particular to one impressive example of professionals from different backgrounds teaming up to drive progress in the medical field: “One session which I found particularly moving this year involved a patient who had lost the use of his arms following a serious accident, a hardware engineer, a neurosurgeon, and a physiotherapist. They shared with the audience the fruits of their joint experimentation, which had being going on for over two years. From their joint efforts emerged a small chip which the engineer had developed and the surgeon implanted into the brain of the patient, who had agreed to take part in the experiment. The physiotherapist’s role was to observe which muscles were activated by the chip.

Also noteworthy at SxSW 2026 was a project run by Dr Ted Berger, Director of the Center for Neural Engineering at the University of Southern California, to implant prostheses in the brain. The project has received considerable investment from the US Defense Advanced Research Projects Agency (DARPA). Dr Berger has focused his work in particular on the hippocampus, the region of the brain involved in long-term memory creation, the aim being to help patients who have lost part of their memory faculties. “We’re trying to understand how short term memory transforms into long term memory and what exact role the hippocampus plays in this process. All memories begin with a code: the perceived information is registered in the form of code. The hippocampus then takes care of transforming this information into a fixed memory, sort of encoded in our memory banks,” explained Ted Berger, revealing: “The goal of our project is to build a mini-prosthesis for the hippocampus. When the brain shows a small hole at a precise spot, that’s where we can help. Once we understand what the role of the missing or damaged part of the hippocampus is exactly we can then create a mathematical model to replicate the function in question and connect this to a micro-prosthesis, a little sliver that we implant in the brain. This micro-prosthesis handles the job of of transforming the information into a long term code.

Various factors may lead to the hippocampus being damaged: a brain trauma, insufficient oxygen reaching the brain, epilepsy or ageing and degenerative illnesses such as Alzheimer’s. “To date we’ve successfully tried our technology out on rats and monkeys. At the moment we’re collecting data on epileptic patients who have agreed to take part in the project. In the longer term, we think it will be possible to repair the damaged areas of the brain and restore people’s memory faculties,” he went on. Even more fascinating, Dr Berger’s team has even succeeded in ‘increasing’ the memory capacity of some rats. So perhaps the era of the ‘superhuman memory’ is not too far away?

Precision Medicine Initiative: from genome studies…

There was also a good deal of discussion at SxSW 2016 on the growing digitisation of the public sector, not least the determined initiatives taken by the US authorities to promote innovation in this field, health being an important area for this. A little over a year after the Obama White House launched the Precision Medicine Initiative, the progress logged by the administration and its partner organisations is very encouraging. This initiative was launched in January 2015 with a budget of over $200 million. Its aim is to revolutionise the current approach to healthcare and the way patients are treated, in particular by developing treatments tailored to a person’s genetic profile. The diseases primarily targeted by the initiative are cancer and rare genetic conditions. In the longer term, the project will be bolstered by input from over a million volunteers, who have agreed to share their medical records and genomic data in order to help drive progress in healthcare, which is set to become increasingly tailored to the individual.

During a SxSW session entitled The President's Precision Medicine Initiative, Claudia Williams, Senior Advisor for Health Technology and Innovation at the White House, reminded the audience of the basics of the initiative: ‟We’re hoping to build a huge database – bringing together both genomic data and information on patients’ environments – which will available to everyone, so that discoveries not only come from the scientific community but, more importantly, from collaboration between players from all fields and sectors.

 Taha Kass-Hout, John Wilbanks, Claudia Williams à l'occasion de la conférence au sxsw

From left to right: Taha Kass-Hout, John Wilbanks and Claudia Williams at a SXSW session entitled The President's Precision Medicine Initiative

So what has been achieved so far? The Food and Drug Administration (FDA) to which the US government has allocated $10 million of the initiative’s total budget has announced that it will focus its efforts on the development of precise DNA testing by mobilising the entire community involved in genome research. ‟Humanity has this treasure, the genome, in common.  It’s the combination of genes together with their variations that makes us unique. But it’s also their mutations which are the cause of tragic illnesses such as cancer. Moreover, 80% of all chronic illnesses are linked to rare genetic mutations,” pointed out the FDA’s Chief Health Informatics Officer Taha Kass-Hout, underlining: “Today there’s no guarantee that DNA testing will give us sure results or that a test taken today will still be valid in six months’ time. Given that the results of DNA testing are not fully reliable, how can decisions be taken on the basis of those tests be reliable?  Today, we lack precision and we still have a lot to discover: to date 23% of the human genome sequence is as yet unknown.

The FDA has certainly implemented Barack Obama’s wishes with the launch last December of the precisionFDA platform. ‟Since we launched the platform, over 1,000 members –scientists, pharmaceutical laboratories, regulatory organisations, cloud computing firms, suppliers of DNA tests and so on – a third of them based outside the United States, have joined precisionFDA. During the first phase of the portal, the idea is to provide the community with a private space in which to assess the accuracy of DNA tests based on next generation sequencing, allowing users to benchmark tests, and also to provide a public space to all members where everyone can publish the results of their trials. The code is open on Github,” revealed Taha Kass-Hout.

…to an overall revolution in the health sector

However, points out John Wilbanks, Chief Commons Officer at Sage Bionetworks, an NGO which is taking a new look at biomedical research: ‟In the past the government has made substantial investments in scientific research, especially genome research, but the ‘Precision Medicine Initiative’ goes much further than genome research. It involves healthcare as a whole, bringing together technology and medical and scientific research in a formalised, regulated way, which is something completely revolutionary”.

As far as Sage Bionetworks, another organisation taking part in the initiative, is concerned, progress is clearly being made. The NGO has set out to gather data on Parkinson’s disease sufferers. Launched this month, the mPower survey enables volunteers who suffer from Parkinson’s disease to share key information with a community of qualified scientists via a smartphone app.

It all started with one question: is there a disease for which we could measure progress accurately enough by using a telephone? Parkinson’s seemed to fit the bill. The app we’ve developed enables people to record their bouts of shaking, assess their dexterity in writing a text message or gauge their muscle tone. Based on these indicators we can then make a precise description of the illness and in the longer term this could provide a very useful basis for developing treatments to improve the quality of life of Parkinson’s disease patients. We intend to do this on a large scale. We’ve already started but we do need to do it properly. For ethical and legal reasons, when we invite people to take part in the adventure, we need to inform them of their rights and the implications getting involved. And given that we want subsequently to be able to share the data, it’s vital that we build a product that incorporates this consent requirement,”  stressed John Wilbanks.

Home page d'mPower, initiative lancée par Sage Bionetworks

Home page d'mPower, initiative lancée par Sage Bionetworks pour collecter des données sur la maladie de Parkinson

Many readers will remember the scandal that was caused in October 2013 by the failure of the portal. However, the responsiveness of the authorities – who put a team together very quickly to make sure the platform worked properly – to this crisis, plus the progress already made by the Precision Medicine Initiative, demonstrate not only a genuine determination to push the public sector to get in sync with the technological advances being made in the health sector, but also a real ability to get things moving. ‟Today, firms such as Google and networks such as PatientsLikeMe are making substantial progress, which is great. However, we want to create competition around health databases. Health data is so important that this is now becoming a necessity,” argues John Wilbanks.

It is also worth noting that the Precision Medicine Initiative dovetails closely with the vision of healthcare of the future that was articulated at the SxSW conference. We are clearly entering the era of precision medicine but this will only become reality if the various different players in the health industry, including healthcare practitioners and the patients themselves, work together to find the right solutions.

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