MARCH 2017	01
The Enduring Success of EMIF: A Platform for FAIR Data and Collaboration
EMIF AD-MET Joint GA Meeting, Budapest 2016	KEY POINTS
		The success of EMIF proves that the need for findable, accessible, and useful data continues to grow
		EMIF and IMI have created a model that effectively addresses the need for effective data collaboration
		The impact of EMIF and IMI is far reaching, and highlights the need for more of this kind of initiative
	CONTRIBUTORS
		SIMON lovestoneProfessor of Translational Neuroscience, Oxford University, ​Overall joint program lead for EMIF
		BART VannieuwenhuyseSenior Director RMEDS (Real World Evidence, Medical Affairs, Established Products, Statistics) Quantitative Sciences at Janssen, Coordinator of the overall EMIF project

Since IMI began in 2008, it has funded many successful programs to improve healthcare across the EU, and EMIF has been no exception. The accomplishments made through EMIF, especially with dementia, metabolic disorders, and data harmonization, have produced a proven model for collaboration and data management in medical research. In doing so, “EMIF is allowing research to happen at a speed and scale that was previously not possible,” says Bart Vannieuwenhuyse, Coordinator of the overall EMIF project, and Senior Director of RMEDS Qualitative Sciences at Janssen. To continue that progress, EMIF and IMI need your support.

Simon Lovestone, Professor of Translational Neuroscience at Oxford University, and the overall joint program lead for EMIF, reveals that “one of the things that EMIF is attempting to resolve is this observation that we all make in science, that there is a vast amount of data that is underutilized.”

Technology has enabled us to create and store mountains of data, but finding and utilizing it tends to be either impossible or impractical. That data exists in two forms. First, electronic health records (EHR) from routine patient care, which provide not only a huge sample size otherwise unattainable in traditional research, but also in-depth observational data collected from the experience of individual patients. Second, research data that has already delivered value for a particular project, but could potentially be re-used for a number of other projects. “EMIF is designed to tackle that,” explains Simon. EMIF makes data visible and provides the tools to access and analyze it.

The EMIF Catalogue Home Page includes multiple portals, including the EMIF-AD community, second from the left 

The success of the EMIF initiative has brought medical research to a new level by making data more FAIR (Findable, Accessible, Interpretable, Reusable). To demonstrate this, take the EMIF-AD community in the EMIF Catalogue, which has recently been made available to the public. Through the Catalogue, EMIF has not only made data on Alzheimer’s Disease more visible, but has also created tools to efficiently access and use that data by putting it in a common format. It has been an, “enormously difficult task,” Simon admits, but the Catalogue is already demonstrating value. So far, programs in Europe have already made use of it, including the Dementias Platform UK (DPUK) and the European Prevention of Alzheimer’s Dementia (EPAD), another program funded through IMI.

The impacts of EMIF and IMI have even made their way across the Atlantic Ocean. The 21st Century Cures Act, a United States law enacted by President Obama in December 2016, cites IMI as a successful example to emulate. The important work made possible through EMIF needs to continue. Although EMIF, itself, is finite, it provides a successful model for future collaborative projects in Europe, and the world. Contact Simon or Bart for ideas to extend IMI and EMIF’s impact through the rest of 2017, and beyond.

MARCH 2017	02
Building Bridges: How EMIF Encourages Collaboration in Metabolic Research and Beyond
	KEY POINTS
		Collaboration between fields, industries, and sectors has been immensely fruitful
		Sharing data and collaboration between experts has allowed researchers to take their discoveries to the next level
		Support for the collaborative efforts of IMI should continue even as EMIF begins to wind down
	CONTRIBUTORS
		ULF smithProfessor, University of Gothenburg, Project Lead of the Metabolic topic
		DAWN WATERWORTHDirector of Genetics, Cardiovascular, Metabolic and Dermatology, GSK, EFPIA lead of the Metabolic topic

Regardless of field, EMIF has been a vehicle for researchers to come together in ways that were previously not feasible. That effect has been particularly powerful in the field of metabolics, via EMIF-MET. Two influential members of the metabolics community, Ulf Smith, Professor at the University of Gothenburg, and Project Lead of the Metabolic topic, and Dawn Waterworth, Director of Genetics, Cardiovascular, Metabolic, and Dermatology at GSK, and EFPIA lead of the Metabolic topic, reveal some of the benefits of that enhanced level of collaboration.

Some of the most meaningful discoveries and advancements are not possible if researchers don’t have the infrastructure to go beyond their own field. Dawn explains that in order to get the full value from research, we need to seek out a variety of perspectives. “The lesson [learned from EMIF] is that you have to reach outside your discipline,” she says. EMIF has provided the unique opportunity for researchers across Europe to do exactly that.

In fact, recent a recent bibliographic study has indicated that IMI initiatives receive among the highest citation indexes, and involve collaborations of authors across sectors, industries, nations, and disciplines. Ulf explains that researchers have gained connections that will endure even beyond EMIF. “More than facilitated, it has actually built those connections and relations,” he says. 

In a pre-EMIF research setting, scientists dug deep into small cohorts and identified inspiring possibilities through their projects, “but,” Ulf says, “we don’t get any further than to say, ‘yes, it looks promising in a limited number of individuals.’” When we have the opportunity to work with people who have done that in-depth research within different infrastructures and with different populations, it’s “extremely rewarding,” he says.

Another rewarding experience are the truly novel results that have only become possible through the recent work of EMIF-MET. Ulf cites a particularly interesting publication which found that mannose is a circulating biomarker of insulin resistance and obesity-associated complications. “We could not have done [this] without the different extremely carefully phenotyped cohorts we collected in the EMIF Metabolic topic,” says Ulf. What’s more, that is only the beginning. In the large follow-up study that will be submitted shortly, “we have identified that mannose predicts future type two diabetes and cardiovascular disease,” he adds.

With over 40,000,000 de-identified patient records from across Europe available, researchers can look at the development of metabolic disease over time, or focus intervention on individuals with high risk. That enables researchers to test, validate, and translate new ideas into valuable concepts that are potentially useful in areas like disease development or therapy. EMIF and IMI make it possible to derive new insights from research. 

EMIF has produced important work, which, “needs to be maintained,” implores Ulf. The professional relationships that have been cultivated through EMIF will continue even as EMIF begins to wind down. A scientist in genetics, like Dawn, might have a wide network within the field of genetics, but EMIF and IMI “broaden my reach,” she says, adding that, “it allows you to do better, more expansive science at the end of the day.” That is why these collaborations need to continue, whether by supporting new IMI initiatives, or by broadening our professional networks.
Left image: EMIF-Metabolic Project Achievements

Keep up with the contacts you have made within EMIF, and continue to take advantage of networking opportunities that push you outside your field or sector. The connections we make will ensure we continue to press forward as a science community and develop innovations through research. Contact Ulf or Dawn to collaborate or network further within—or beyond—the field of metabolic disease.

MARCH 2017	03
Reuse and Reconvening: Data Sharing and Networking in Alzheimer’s Disease Research
	KEY POINTS
		The benefits of reusing data through the EMIF project have been undeniable
		Bringing such a diversity of healthcare perspectives together has yielded wonderful unforeseen results
		The tools that have been developed through IMI have been a great help, but it is the people that make it all happen
	CONTRIBUTORS
		PIETER JELLE VISSERAssociate Professor, Maastricht University, VU University Medical Center, Project Lead of the AD topic
		JOHANNES STREFFERDirector Experimental Medicine, Janssen, EFPIA lead of the AD topic

Medical researchers in Europe are looking at things in new ways thanks to EMIF’s powerful new infrastructure for collaboration. Associate Professor Pieter Jelle Visser at Maastricht University and VU University Medical Center, and Johannes Streffer, Director of Experimental Medicine at Janssen, are both leaders within the Alzheimer’s disease (AD) topic in EMIF, and represent the collaboration between academia and industry that is one of the core achievements of the EMIF initiative. Their insights about the success of EMIF-AD shed light on the path ahead, as well.

The new infrastructure for collaboration provided by EMIF has already proven to be a valuable tool to those searching for treatments associated with AD, especially as its impact on society continues to grow. “It’s a major disorder with a huge social and economic impact, and there is no treatment yet,” explains Pieter Jelle. That lack of knowledge makes the infrastructure created by EMIF especially important for disorders like AD. It allows us to reuse data that has already been collected, significantly lowering the time and cost required to conduct research. One example is a meta-analysis of 50 cohorts (10,000 subjects) worldwide that was conducted recently, which took only two years. “But,” Pieter Jelle added, “if we had collected 10,000 [subjects] from scratch it would have cost around 25 million Euros, and would have taken something like 10 years.”

Left image: EMIF-AD Project Achievements

Another major benefit created by EMIF-AD has been “getting industry and academia at one table and aligning on goals,” says Johannes. It has also fostered collaboration between different representatives of the Pharma industry, and even researchers in completely different fields who would never have had incentive to do so before. One benefit of bringing so many parties together is that it allows us to get to know one another’s perspectives. Pieter Jelle explains an example: those in the field of metabolics often focus on how metabolic disorder affects obesity and mortality, while he, as a person working in AD research, is interested in how such disorders could affect the brain.

(left to right) Suzanne Craft, Simon Lovestone, Hilkka Soininen, and Ulf Smith on a panel at the EMIF AD-MET joint meeting in Budapest, March 2016

Pieter Jelle and Johannes are passionate about one topic in particular; that the work being done within EMIF-AD and IMI continues. The infrastructure and technology used to connect the medical research community in Europe has been a wonderful collaborative tool, but it is not just a technological platform. Johannes insists that, beyond the technology involved in EMIF, the collaborative spirit that has been so prevalent needs to endure. That is what will take the success of EMIF to the next level, be it in AD research or beyond.

Keep in touch with the connections you’ve made through EMIF, and reach outside your current research communities to develop new relationships. Contact Pieter Jelle or Johannes with ideas for working across fields and sharing data, in support of AD or other research.