By Jo Willey, journalist and former Daily Express Health Editor whose work also appears in the Daily Mail, The Mail on Sunday, and The Sun
It was only when a progressive-thinking doctor treating her as an adult decided to sequence her whole genome that the coeliac diagnosis was confirmed. In a surprise discovery, her genetic data also ruled out epilepsy, for which she had been taking medicine for decades which had caused a host of devastating side-effects. “I pursued a career in genetics because I feel I owe something back for effectively being saved by genomics. Something as simple as not eating cake or anything else with gluten made the seizures go away,” she explains.
Hackett—an academic, entrepreneur, investor and yoga instructor—is on a lifelong personal mission. As chief commercial officer at Genomics England she wants to ensure, through revolutionary partnerships, that millions more people will benefit from the transformative potential of genomic medicine, just as she did in the field’s infancy.
“We are a society which doesn’t take enough care of its health. We are waiting for someone to give us a pill to make it better without changing our lifestyle. When people are given medical advice on the basis of their genetics they are much more likely to adhere to it. Genomics makes us take better care of our whole health. I feel I am living proof of that,” she says.
Genomics England’s groundbreaking 100,000 Genomes Project, which expects to reach its target by the end of this year, is the world’s largest depository of whole genomes combined with healthcare records from the DNA of people with cancer or rare genetic diseases. From October 1, the UK’s NHS will become the first health service in the world to offer genomic medicine—routine DNA tests—as part of everyday care.
With the UK leading the world in the rapidly-growing genomics industry, Genomics England was made a standalone company in 2013, allowing it to forge commercial partnerships, such as with Roche, much more quickly. Hackett believes the huge potential and opportunity of the growing genomic database—to make breakthrough scientific discoveries and develop treatments for many of our biggest killer diseases—can only be realised through productive academic and industry partnerships.
“We are delighted to have Roche as a partner with us. We really look for people who want to embrace the idea that such partnerships can help them achieve what others can’t bring on their own.”
For Roche, linking up with Genomics England to access its unprecedented de-identified genetic and medical records data is a “win-win” situation. “The societal benefits of such collaborations are clear,” according to Bryn Roberts, Global Head of Operations & Centre Head of Roche’s Pharmaceutical Research and Early Development group. “With access to these high quality data from tens-of-thousands of patients, we believe that we will be able to invent and develop more effective medicines more quickly and sustainably. For society it should lead to earlier access to new, and better medicines that work specifically for them.”
Cross-sector collaborations between industry, academia, research organisations and even now with other pharmaceutical companies are not just helping individual companies. They are heralding a new era in how pharmaceutical companies are prepared to work. Rather than a siloed, isolated approach to developing new medicines and emerging technologies, companies are now not just embracing partnering with outside organisations, some are even allowing them direct access to their early developments and data in a bid to “communally” accelerate healthcare breakthroughs.
Roberts says, “I believe that if we want to tackle some of the biggest challenges facing healthcare today, we need to bring together high-quality data and brilliant minds from diverse backgrounds. It is no longer just about competing to develop the best medicines. It’s critical that we share information, ideas and learning to generate novel insights that will accelerate innovation and enable us to bring medical solutions to patients more quickly and more effectively.”
Roche’s latest partnership with The Michael J. Fox Foundation for Parkinson’s Research (MJFF) is setting a precedent for this brave new world of sharing by giving patients access to its breakthrough digital biomarker platform for smartphones and smartwatches which remotely monitors their symptom progression. The partnership offers the platform to select participants in the Foundation’s landmark observational study to identify biomarkers of the disease. The study is called the Parkinson's Progression Markers Initiative (PPMI), which is funded by MJFF and a consortium of key industry players, non-profit organisations and private individuals.
Joining the MJFF on its worldwide mission to cure Parkinson’s disease, Roche’s digital biomarker platform will see patients carry the mobile phone with them throughout the day. It will not only remotely monitor their daily motor behaviour—their posture, coordination and movement—for a year, but will ask them to complete daily tests to assess motor symptoms which are impacted by the disease such as speed of finger movements and their ability to maintain their balance.
Sohini Chowdhury, Deputy CEO of The Michael J. Fox Foundation, who oversees its Research Partnerships team, says: “We have a shared goal: a cure for Parkinson’s and better treatments for those living with the disease today. Catalyzing collaborations with pharmaceutical companies like Roche is a key element of MJFF’s strategy to speed the development of breakthrough treatments.”
“We need objective, selective biomarker tests to predict, diagnose and monitor Parkinson’s disease and test the impact of therapeutic interventions. The Roche collaboration is going to add another complementary data element: objective data captured outside the clinic on the daily effects of Parkinson’s disease. Parkinson’s is a 24/7 disease, and this allows physicians and researchers to observe daily life with PD, not just a few time points” Chowdury says.
What makes the collaboration remarkable is that as well as being analysed by Roche and MJFF to determine the progression of motor and non-motor symptoms of Parkinson’s, the data gathered from the platform will also be made publicly via PPMI on a regular basis. This will allow the wider research community—including competitors—to study symptom progression in the disease.
“Our Parkinson’s disease digital biomarker platform has undergone significant development over the past years, and is now uniquely situated to make contributions to the broader field of Parkinson’s disease research,” says Dr Kirsten Taylor, Biomarker and Experimental Medicine Leader.
“We are especially interested in working with the community to build sets of robust digital outcome measures. These will not only assess patients’ symptoms and needs better, but will also facilitate regulatory approval of digital biomarker endpoints in clinical trials.” Taylor explains.
The sharing of what would once be proprietary data are helping transform how clinical trials are conducted. In the future it could significantly slash the current time taken to get medicines from being an idea to a patient’s medicine cabinet. In 2014, Cancer Core Europe was launched to bring together seven leading cancer centres to accelerate the development of new cancer treatments and precision medicine. Roche is now working with the consortium to better identify patients with rare genetic mutations who will most likely benefit from developmental drugs in clinical trials.
Combining Cancer Core Europe’s academic clinical trial data, its biological and genetic testing expertise and results with Roche’s targeted medicines, could help accelerate the development of personalised cancer treatments.
Cancer Core Europe’s Chief Scientific Officer Professor Fabien Calvo says: “We are bringing to the table an academic clinical trial. We have the capacity to explore in the seven institutes from Cancer Core Europe more than 1,000 patients a year for this type of trial. We are able to test their tumours and blood to look at their immune system and they undergo genomic screening.
Depending on the results, they are directed to a specific treatment with new and original medicines from Roche. Bringing all this together we can expect to reach better precision and move towards personalised treatments.”
The future implications for using Big Data to transform healthcare and realise the goal of personalised medicine are huge. It promises to help understand the origins of disease, improve diagnosis, help patients monitor their condition, evaluate medicines, transform how clinical trials are carried out and even analyse how effective healthcare interventions are.
Big Data analysis is now possible thanks to the explosion of digital data being generated with everything we do leaving an electronic record. This data revolution is growing at a rapid rate, harnessing information from a range of sources including electronic health records, payer claims, and mobile health platforms. It is also transforming drug R&D by helping companies establish important research partnerships to develop better medicines than ever before.
Adding real-world data into the mix—using data from patients outside controlled clinical trials which better reflects how they take and respond to drugs in their everyday lives—means drug trials can be improved. This could eventually determine which patients will most benefit from them.
The Electronic Health Records for Clinical Research (EHR4CR) project was funded by the Innovative Medicines Initiative, Europe’s biggest public-private partnership in the life sciences between the European Union and the European pharmaceutical industry. It enables scientists to discover potentially suitable patients for clinical trials. They can search millions of electronic medical records from a growing network of European hospitals while sensitive personal data are kept private and secure.
The hunt for innovative new ways to improve how clinical trials are conducted is always on, to help ensure patients can access medicines through them. The EHR4CR platform not only helps match patients to clinical trials to ensure they get early access to the most promising advances in medicine, the platform is also a powerful tool to help fine-tune the details of a clinical trial. This helps make the trial process and execution smoother and also helps save precious time.
Thanks to Roche, the Royal Liverpool University Hospital has recently become the first UK hospital to join the live clinical data network that is now connected to more than 30 hospitals with access to 20 million patients.
“This is part of a bigger digital data movement that is transforming healthcare,” says Heather Rogers, Research Development & Innovation Governance Manager at the hospital. “Liverpool has some of the most deprived areas in the country and high morbidity within its population. As a Trust we are keen to forge new mutually supportive relationships with industry and be at the forefront of research, helping push the boundaries of science and patient care forwards in order for our patients to access the best possible treatments earlier.”
Roberts says: “We know we can produce brilliant things in isolation. But what we can achieve by engaging a community of partners has the potential to bring sustainable and far-reaching value on a different scale altogether. Breaking down traditional barriers and applying emerging technologies to real-world data, is transforming healthcare and will, in time, deliver amazing new breakthroughs for patients.”
To learn how Roche engages in the 'Electronic Health Records for Clinical Research' project. Contact the
Genomics England
Michael J. Fox Foundation
Cancer Core Europe
Innovative Medicines Initiative
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