Sally Okun is the Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe in Cambridge, MA. She is responsible for the company’s patient advocacy initiatives; she participates and contributes to health policy discussions at the national and global level; and she is the company’s liaison with government and regulatory agencies. Sally joined the company in 2008 as the manager of Health Data Integrity and Patient Safety overseeing the site’s medical ontology including the curation of patient reported health data and an ever-evolving Patient Vocabulary. Okun developed and manages the PatientsLikeMe Drug Safety and Pharmacovigilance Platform.
Prior to joining PatientsLikeMe Sally, a registered nurse, practiced as a palliative and end-of-life care specialist and contributed to multiple clinical, research, and educational projects in that specialty area. She earned her graduate degree from The Heller School for Social Policy and Management at Brandeis University and was a National Library of Medicine Biomedical Informatics Fellow in 2010.
Okun is a contributing author to publications, discussion papers and books on patient engagement, team based care, patient reported outcomes, and health data sharing in social media.
TOOLKIT Project Resource Guide: Measurement to Improve Quality of Care at Life’s End, Brown University. Co-author with Joan Teno, MD http://www.chcr.brown.edu/pcoc/resourceguide/titlepage.pdf
Okun, S, A framework for collaborative, consumer centered care. Innovations in End-of-Life Care. 2003;5(2): www.edc.org/lastacts. http://www2.edc.org/lastacts/archives/archivesMay03/featureinn.asp
Cumming K, Okun S. “Community-based palliative care.” Gerontologic Palliative Care Nursing - Across Illness Trajectories. St. Louis: Elsevier, 2004. 52-64.
Frost J, Okun S, Vaughan T, Heywood J, Wicks P Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe, J Med Internet Res 2011;13(1):e6 URL: http://www.jmir.org/2011/1/e6/
Mitchell, P., M. Wynia, R. Golden, B. McNellis, S. Okun, C.E. Webb, V. Rohrbach, and I. Von Kohorn. 2012. Core principles & values of effective team-based health care. Discussion Paper, Institute of Medicine, Washington, DC. www.iom.edu/tbc
Alston, C., L. Paget, G. C. Halvorson, B. Novelli, J. Guest, P. McCabe, K. Hoffman, C. Koepke, M. Simon, S. Sutton, S. Okun, P. Wicks, T. Undem, V. Rohrbach, and I. Von Kohorn. 2012. Communicating with patients on health care evidence. Discussion Paper, Institute of Medicine, Washington, DC. http://www.iom.edu/evidence
Okun, S., Caligtan, C. “The Evolving ePatient.” Health Informatics: An Interprofessional Approach. St. Louis: Elsevier, 2013 in progress