The recent availability of technology allowing the collection of large amounts of data from a single patient, such as genomic profiling, is one factor contributing to a paradigm shift in the way we think about healthcare. In this new concept of medical care, patients are empowered by their own information, their role in healthcare is emphasized, and clinicians welcome them as part of the same team.
To highlight this change, Genome Medicine launched a special series of articles on Participatory medicine, guest edited by Charles Auffray from the European Institute for Systems Biology and Medicine, France, and Leroy Hood from the Institute for Systems Biology, USA. In an accompanying podcast, Senior Assistant Editor of Genome Medicine, Andreia Cunha, spoke with pioneers in this area – Leroy Hood, Michael Snyder and Kim Norris – to probe the factors driving the shift to a participatory model of healthcare, how the roles of the different stakeholders are being transformed, and what challenges still lie ahead for this model to be implemented on a wider scale. A full transcript of this podcast is available here.
“I think it’s going to open up the possibility for a democratization of healthcare that was inconceivable to think about even five years ago.”
Leroy Hood, Institute for Systems Biology
Guest editor Leroy Hood is a pioneer in systems medicine and as founder and President of the Institute for Systems Biology, USA, has been developing projects that are leading the way to a form of medicine that is predictive, preventive, personalized and participatory – P4 Medicine. Hood obtained his medical degree from Johns Hopkins School of Medicine, USA, and his PhD from the California Institute of Technology, USA. He went on to become a senior investigator at the NIH National Cancer Institute, USA, a Faculty member at the California Institute for Technology, and founder and Chairman of the Department of Molecular Biotechnology at the University of Washington, USA. In this podcast Hood shared his vision of the forces that are driving participatory medicine. Find out more on this topic in the series Editorial by Hood and Affray and a full Q&A with Hood here.
Michael Snyder is the Director of the Stanford Center for Genomics and Personalized Medicine, USA. He has unique experience as both a researcher and a participant, as he underwent integrative personal ‘omics’ profiling over the course of 14 months to identify his risk of developing clinical conditions.
“The first version of omics profiling involved following about 40,000 molecules in my blood. The latest version follows billions of individual measurements between the methylome and the microbiome.”
Mike Snyder, Stanford Center for Genomics and Personalized Medicine
Snyder undertook his PhD in the laboratory of Norman Davidson at the California Institute of Technology, USA, before joining the Ronald Davis lab at the Stanford University School of Medicine, USA. He then established his own group at Yale University, USA. Here Snyder explains what ‘omics’ profiling is and comments on how this could be translated into clinical practice. A full Q&A with Snyder on this topic is available here.
Kim Norris is a patient advocate leader, and President of the Lung Cancer Foundation of America, an advocacy group for lung cancer patients that aims at raising awareness and funds for research into lung cancer. Hailing from a background in management consultancy, she began her career in patient advocacy in 1999 at the University of California, Los Angeles, USA, where she became a patient advocate for Lung SPORE (Specialized Program of Research Excellence). Norris went on to co-found the Lung Cancer Foundation of America in 2007.
“We realise that everybody’s tumour is unique and has unique characteristics to it. […] Every lung cancer patient’s tumour should be tested, as far as I’m concerned, for its genomic mutations.”
Kim Norris, Lung Cancer Foundation of America
Norris discusses how the role of patients has changed since lung cancer genomes became available. Read more on this in a full Q&A with Norris here.
The complete list of series articles: