Supporting patients using online tools to collect health data

Sally Okun RN – Vice President for Advocacy, Policy and Patient Safety.

In her work with PatientsLikeMe Sally has worked on the standardizing the language of patient information. This creates new insight and understanding of patients, where clinical terminology and language fall short. Her role has also evolved to broader system thinking about how PatientsLikeMe can be a tool to bring the patient voice to the forefront of research and clinical care delivery. In this video we discuss these and many other ideas, such as how nurses can continue to develop and grow while working in roles outside of direct patient care.

Some of the questions Sally answers are:

  • How did a nurse start working at PatientsLikeMe?
  • How did you learn to translate and explain your perspective as a nurse and clinician to others with non-clinical expertise?
  • Do you still think you are developing your clinical knowledge in this non-practice role?
  • What do nurses need to know about clinical data?
  • How do you see PatientLikeMe impacting patient health, the provider relationship and the future of healthcare delivery?
  • How is PatientLikeMe integrating from consumer health devices and sending information to electronic healthcare records?
  • What is the impact of having data that extends over much longer time intervals than nurses have traditional dealt with (clinical shifts or admission periods)?
  • How do we understand patients’ in an environment that we are not physically present?

Finally, Sally and I want to ask you:

  • How have your patients responded about how they are tracking their health or finding health information?
  • Have you used consumer based health tracking websites, like PatientsLikeMe, or others to track your own health or a family member?


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