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Connecting Information and the Future of Health Care

Six views of the promises—and challenges—in store.

By Allison Proffitt

June 8, 2011 | In the final plenary session at the 2011 Bio-IT World Conference, six experts offered personal views on the future of information management and medicine.

Debra Goldfarb, senior director, strategy at Microsoft, was one of the keynote speakers at the original Bio-IT World Conference in 2002. “Where do we see the next horizon where there is a high degree of need and extraordinary complexity?” she asked.

Working the Gates Foundation and the Malaria Control Development Network, Goldfarb is applying concepts in data management and high-performance computing to the malaria epidemic, one of many global health problems in the developing world where data gathering and analysis is hugely challenging. For example, death is hard to measure in the developing world, contributing to a huge gap between when one sees the data and the onset of harm.

Goldfarb admitted said she’s not an infectious disease expert, but said, “I’m someone who understands the role modeling and simulation can play.” While some of the data management issues are familiar—data exhaust and hesitancy to collaborate—Goldfarb added others that are unique to the developing world. “Keeping your people sick and hungry is a strategy” in some regions, she said.

Goldfarb’s challenge is getting usable data to “everyone from infectious disease agents to field workers to policy makers. So we have to think about an environment that allows decision-making against this data that scales to all the different constituent populations that matter.”

Benjamin Heywood, co-founder and president of PatientsLikeMe, quoted Catherine the Great: “A great wind is blowing and that gives you either imagination or a headache.” At PatientsLikeMe, Heywood said there’s a little bit of both. Heywood and his brother Jamie founded the company after their brother Stephen was diagnosed with ALS (see, “Computing Stephen,” Bio•IT World, July 2010).

PatientsLikeMe is a “bioinformatics platform wrapped in a social network wrapped in a community’s clothing,” said Heywood. The site makes public all of its users’ data—from diagnoses to treatments to side effects to habits of prayer and meditation, providing “a really deep understanding on every level of the patient.”

“Discovery research is incredible but it’s done in trials, it’s done in labs, and it’s not done within the variants of the real world,” Heywood said. Such a design “doesn’t allow for real-time capture of what’s done in the real world.” But PatientsLikeMe’s patient-volunteer approach makes it possible “to do high-quality phenomic outcome research in the real world, in real time.” Proof came in a recent peer-reviewed study in Nature Biotechnology that disputes the reported clinical benefit of Lithium in ALS patients. Heywood said it was time for the pharma community to take a similar patient-centric approach.

We’re in the middle of a revolution, said Ken Buetow, of the National Cancer Institute, to create “a new model of generating health as opposed to treating disease.” But for now, “technology is transforming every area of the economy while we in biomedicine are still pretty much a backwater.” It’s not that technologies don’t exist, but rather that they exist in isolation. The industry is an “interconnected collection of different sources of information,” from electronic health records and social media to wireless devices and smart phones. No single source holds all the data.

Buetow highlighted several caBIG efforts to connect myriad sources of information, such as a national repository holding 1.5 million biospecimens “that would be available on demand.” Working with Microsoft, caBIG hopes to collect health data into what Buetow calls “ultra-light electronic health records” to create health information exchanges. And with the Susan Love Army of Women, caBIG is developing survey instruments to quickly build online virtual cohorts. caBIG was able to recruit more than 25,000 women in barely two weeks for an online cohort, “showing the power of engaging directly with consumers to translate and transform the research endeavor.”

Buetow also cited the I-Spy trial with the University of California, San Francisco. This is a 20-site next-generation clinical trial that combines the molecular characterization of individuals with imaging and an adaptive trial design. “Rather than doing sequential trial analysis, those multiple combinations are evaluated in real time together, where one can swap out individual arms and bring in new arms.” The trial also prioritizes patient information; personal health records and continuity of care documents are cycled back to the patients to facilitate participation and engagement.

Mark Boguski (Beth Israel Hospital) continued the health information theme in discussing his latest hobby: Always looking for “teachable moments,” Boguski said that social research shows that celebrities help form cultural identity, build community, and serve a research function for society at large. The challenge was to take a “frivolous cultural phenomenon”—society’s obsession with celebrity culture—and use it for effective health education.

The “Goody-Gaga Effect,” Boguski said, refers to the spike in search engine traffic that correlates with a celebrity association of a particular disease or condition. He named the effect after Jade Goody, a contestant on the British TV show Big Brother who courageously battled cervical cancer, and Lady Gaga, who has revealed she had borderline lupus.

Celebrity Diagnosis is not “just a voyeuristic form of entertainment,” said Boguski, who launched the site with his physician wife. The site contains more than 700 stories about celebrity illness, spanning 250 different conditions, and drawing 250,000 visitors every month. “We have some data that it results in behavior change,” he said. “Teachable moments don’t have to be direct personal experiences, but can be vicarious.”

“And now for something completely different,” said Martin Leach, the former Merck executive and new chief informatics officer at the Broad Institute, transitioning from celebrities to video games. Prompted by two recent books—Reality is Broken by Jane McGonigal and Changing the Game by David Edery and Ethan Mollick—Leach has been wondering why we aren’t leveraging gaming concepts in pharma and bio-IT.

“The average gamer is 35 and has been playing for 12 years. That’s a lot of time and a lot of energy if we can tap into it,” said Leach. Game developers understand how to inspire extreme effort, reward hard work, and facilitate collaboration at unimaginable scales. “This is exactly what we need, whether it’s pharma or research.” Leach contrasted an exponential reward-motivation curve in a typical video game and with a traditional 20-year career curve with 4-year stretches between rewards or promotions. “What would you prefer? Continuous recognition? People in the video game world know how to design things to constantly entice people.”

Leach challenged the industry to apply the same concepts to rewarding researchers. “What if you rewarded people for borrowing lab reagents versus buying new ones? What if you rewarded people for effective data management and curation stewardship or proficiency in scientific software? Reporting safety near-misses?” There are opportunities to put the right motivations in front of people.

Yury Rozenman, global head of marketing, pharmaceutical and life sciences sector, BT Global Services, emphasized the need for pharma to embrace changes or be left behind. Within five years, health care will be a commodity, with emergent technologies assuring that health needs are met daily. Empowered patients and governments will require that pharma be more transparent. The pharma industry does a good job now of talking with lawyers, doctors and lobbyists, but not patients, he said, and that must change.

Payment models will change to reward not just the number of units delivered, but the success of the product. He noted that the UK’s National Institute for Clinical Excellence has already approved a scheme paying only for effective treatment by multiple myeloma drug Velcade. And there will be increased focus on data security. “Pharmas will be responsible for the entire journey, from the development to the delivery to the patient and must guarantee the pedigree of the product at every step of the way,” he said.  


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