Patient engagement and collaboration are crucial to accelerating innovation in healthcare, according to Research!America. As the nation's largest not-for-profit public education and advocacy alliance, the organization says these should be priorities for leaders in government, academia, patient advocacy, scientific societies and industry.
These were among the themes that emerged at Research!America’s 2018 National Health Research Forum in Washington, DC.
Elsevier’s Tim Hoctor, who was invited to join the head of the CDC and other thought leaders on panels discussing new horizons in technology impacting health outcomes, said he’s encouraged by two broad themes:
- The improved capabilities to use data to predict scientific outcomes.
- A far greater willingness to collaborate.
“It’s changing fundamentally what pharmaceutical research looks like,” said Tim, VP of Professional Services Life Science at Elsevier. As an example, he cited BenevolentAI, an AI company with end-to-end capability from early drug discovery to late-stage clinical development: “Benevolent is bypassing traditional bench research and simply gathering as much data as possible and doing it computationally,” he said.
He added: “This will change pharma as we know it. To not just analyze research but to predict it. To write AI and to not be afraid to use machine learning.”
Tim thinks collaboration is key: “The willingness to collaborate breaks down the barriers between companies doing fundamentally the same things in the same area. The days of 50 pharmas doing 50 different things, are gone.”
He acknowledged there are challenges presented by GDPR, and broader concerns about the use of personal data, but added, “the willingness to share the data is there, there is an acknowledgement of the shared responsibility to get a therapy to market and not worry that this is my data.”
Panelist Greg Simon, President of the Biden Cancer Initiative, agreed with the need to share personal data: “Patients want to share their data, it’s true,” he said. “The disruption that’s going to happen is going to happen from the bottom up. Patients should be able to require that their doctor and their hospital and research center share their data. It shouldn’t be a request. It should be a mandate.”
“The patient should require the hospital share their data,” he added. “That they have the ability to convince their care providers to join the system. We have to realize that we’re all in it together.”
One panelist warned that the monetization of data in healthcare is the enemy of collaboration, and while everyone wants to do the right thing, meaningful collaboration is difficult. Tim replied by agreeing that while the players all silo competitive data, there’s a lot of work being doing to expand the boundaries of pre-competitive data.
Tim mentioned the work of the Pistoia Alliance, a global nonprofit alliance established by representatives of AstraZeneca, Novartis, GSK and Pfizer that works to improve innovation in life sciences R&D. The Pistoia Alliance works to lower barriers to innovation in R&D through pre-competitive collaboration. (You can read more about the Pistoia Alliance and Elsevier’s donation of its Unified Data Model here and below.
Tim said data is important, but it’s only part of the story:
The real insights will come from connecting isolated, disparate pieces of data that will feed the intelligent systems that we put to work. Answering questions won’t be achieved with a generalist tech platform; we need purpose-built platforms grounded in science and backed by technology to solve humanity’s biggest problems, like cancer. We’re working on this now with Entellect.
Data-sharing solutions: Elsevier and the Pistoia Alliance
A challenge researchers face is that data sets can come from as many as 500 different sources at a single time, none of which is like another; finding new medicines and understanding how well current treatments work will rely on ability of systems to read data on social media — from ingestibles and injectables to IoT sensors.
To address this challenge, Elsevier donated its Unified Data Model (UDM) to the Pistoia Alliance.
The UDM is an XML file format originally developed by Elsevier to improve the upload of external data sets into its tools. It will now be developed and extended under the stewardship of the Pistoia Alliance, with the ultimate aim of publishing an open and freely available format for the storage and exchange of drug discovery data. The UDM will become a common model allowing data to be easily shared and integrated between parties. This will greatly accelerate drug discovery research and overcome a shared barrier to collaboration.
For Elsevier, the ultimate goal of this project is to ensure that data is a “common language” in the research community. Achieving this goal will enable the industry to experience fewer bottlenecks in their research and will lift of barriers to collaboration, innovation and discovery, often caused by a lack of data standards.
Elsevier aims to eventually publish an open and freely available format for the storage and exchange of drug discovery data.
The National Health Research Forum
Research!America’s 2018 National Health Research Forum was held at the Newseum in Washington, DC, on September 6. Experts included Dr. Ivor Benjamin, president of the American Heart Association; Gopal Khanna, director of the Agency for Healthcare Research and Quality; Greg Simon, president of the Biden Cancer Initiative; Dr. Robert Redfield Centers for Disease Control and Prevention Director; Dr. Francis Collins, director of the National Institutes of Health (NIH); Dr. France Cordova, director of the National Science Foundation; Alex Azar II, Secretary, Department of Health and Human Services; uis Miguel Camargo, UCB, Inc’s director of innovation networks; Dr. Guillermo Prado, Dean, Graduate School, University of Miami; and Mikael Dolsten, president of worldwide research and development at Pfizer.