McCollister-Slipp to Clinical Researchers: Find Ways to Incorporate Patient-Generated Health Data into Clinical Trials

(New York, NY – November 17, 2014) – Galileo Analytics Co-Founder Anna McCollister-Slipp today called on pharmaceutical companies and the Food and Drug Administration to find ways to incorporate new forms of patient-generated health data into clinical trials. McCollister-Slipp made her remarks as part of a panel on patient-generated health data at this year’s Partnering for Cures conference in New York, sponsored by Faster Cures and the Milken Institute.

McCollister-Slipp was among a select group of genomics experts, researchers and technology developers discussing the promise of new digital health and genomic data Screen Shot 2015-02-03 at 8.22.39 PM Screen Shot 2015-02-03 at 8.16.33 PMsources for transforming clinical research, as well as the barriers to including new, innovative patient-generated data streams into clinical research. Panel members included:

  • Eric Green, Director, National Human Genome Research Institute, National Institutes of Health
  • Anna McCollister-Slipp, Co-Founder, Galileo Analytics
  • Tom Parsons, Co-Founder, HealthXL
  • Eric Schadt, Director of the Icahn Institute for Genomics and Multiscale Biology, Chair of the Department of Genetics and Genomics Sciences, and the Jean C. and James W. Crystal Professor of Genomics at the Icahn School of Medicine, Mount Sinai
  • Ravi Seshadri, Vice President, Technology, NantHealth
  • Todd Sherer, CEO, The Michael J. Fox Foundation for Parkinson’s Research (moderator)

McCollister-Slipp appealed to Pharmaceutical and medical device researches to bring patients into the process of designing research protocols, which she says might help increase the patient participation in clinical research.

Referencing a clinical trial for a new diabetes drug in which she participated in 2013, she said “Everything about the trial process was designed for the convenience of everybody in the study process but the patients. Despite the fact that one of the big buzzwords in recent years is patient-centeredness, It was painfully obvious that the protocol designers had never consulted anybody who had lived with the disease.”

For a full video and more coverage of the panel click here.

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McCollister-Slipp to Informaticists: Make data liquid!

(Washington, DC – November 16, 2014) – Galileo Analytics Co-Founder Anna McCollister-Slipp today called on medical informaticists to prioritize “data liquidity” and the free flow of health data and to do so with a sense of urgency that the issue deserves. Her remarks were made during a panel discussion on the opening day of this year’s American Medical Informatics Association (AMIA) meeting in Washington, DC.

“Until we get to the point where data is flowing freely among health care providers, medical devices and patients we will make little progress in improving patient care with health information technology,” she said. “Interoperability and ‘data liquidity’ are essential if we ever hope to see innovation that enables individuals to better manage their own health and physicians to better care for their patients.”

“We’ve invested $33 billion in taxpayer money and billions more in private investment to essentially replicate in digital form the acute care and specialty care system that has failed to meet our needs for decades,” she said. “We’ve made tremendous progress in many ways, but little else will change unless we can find a way to get data out of the silos and flowing freely.”

McCollister-Slipp was one of four panelists speaking about emerging platforms for patient-centered care. The panel was part of the AMIA Workshop on Interactive Systems in Healthcare. More information about the conference and panel are below:

Emerging Platforms for Person-Centered, Community-Wide Care Coordination: Needs, Challenges, and Solutions

Katherine K. Kim, PhD, MPH, MBA, University of California Davis (chair and moderator)

Charles Boicey, MS, RN-BC, CPHIMS, State University of New York Stony Brook

Janet Freeman-Daily, Seattle, WA

Susan Hull, MSN, RN, Wellspring Consulting

Anna McCollister-Slipp, Galileo Analytics

Abstract

As the population ages and the burden of disease increases, there is great need for community-wide care coordination (CWCC) to help deliver triple aims of improved quality, population health and cost. This is particularly critical for underserved patients such as those in rural and low-income communities who experience health disparities. The complexity of coordinating across multiple institutions, care teams, and community services while maintaining a sharp focus on person-centeredness necessitates robust and adaptive technologies. Such systems are foundational for accountable care organizations and health home models. There is little known about technology platforms to accomplish this goal. An initial review of 20 commercially available systems marketed as fulfilling care coordination and patient engagement were assessed on 24 criteria. Most systems were lacking features for patient engagement and collaboration across multiple organizations. A diverse panel of patients, researchers, clinicians, and designers will consider and debate the needs and challenges of person-centered CWCC as well as promising technology solutions.

About AMIA

AMIA, the leading professional association for informatics professionals, is the center of action for 4,000 informatics professionals from more than 65 countries. As the voice of the nation’s top biomedical and health informatics professionals, AMIA and its members play a leading role in assessing the effect of health innovations on health policy, and advancing the field of informatics. AMIA actively supports five domains in informatics: translational bioinformatics, clinical research informatics, clinical informatics, consumer health informatics, and public health informatics.

 

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