This past week was the Digital Health Conference given by the NY eHealth Collaborative.

The main thrust touted the benefits of digital health including:

  • Boosting patient interaction with healthcare providers
  • Enhanced quality of healthcare
  • Better  healthcare accessibility
  • Controlling the spiraling healthcare costs

Role of Social Media

John Brownstein, director of the Computational Epidemiology Group at Boston Children’s Hospital pointed out that engagement in social media quantifies health in a manner that traditional public health systems can’t.  Social media helps with:

  • Chronic disease
  • Infectious disease
  • Drug abuse
  • Adverse effects of prescription medication and its safety
  • Diversions of medications
  • Individual experiences

Many professionals agreed that social media is playing a pivotal role.  According to Martin Coulter, CEO of PatientsLikeMe, forums, chat rooms, and through usage of various online social networks, the “patient voice is elevated to the level of medical evidence”.

Coulter pointed out that “based on PatientLikeMe’s experience:

  • Members are engaged and want to participate
  • Sensors, such as wearable devices, help increase patient engagement, activation and data donation
  • Members share sensor data with doctors
  • Objectively captured sensor data correlates with measures of functional disability as reported subjectively by patients
  • The pharmaceutical industry is systematically learning from patients and applying those lessons to business needs”

Security Issues

Privacy issues were continually discussed throughout the conference as providing an obstacle to exchange of health information and tele health. There is a dilemma regarding the balance of complying with HIPAA standards and patient consent for information sharing.

A member of the Health IT Policy Committee and partner at Manatt, Phelps & Phillips, a healthcare practice, Deven McGraw says:

Patients have a dual interest in wanting to have their data shared to improve the care they receive and protecting their privacy.  An ‘opt-in’ consent approach might feel more patient-centered, but it’s very expensive and ends up emphasizing patients’ privacy interests over patients’ data-sharing interests.  Instead, federal work groups come down on the side of meaningful opt-out as the best consent approach.

McGraw further stated that by offering patients a portal for access to their own data, the benefit of health data sharing will become more apparent and help transition more people into the practice of using it.

Ann Waldo, a partner at Wittie, Letsche & Waldo stated HIPAA’s “data culture” is “highly resistant to sharing, even with patients” and that “uncertainty among innovators as to the rules of the road outside HIPAA” is “holding the market back”.


So, the question that I have for you is “how eager are you to share your health data if it means improving medical conditions or getting answers to your own health questions?”  Do you participate in the thrust of patient engagement or are you holding back, waiting to see if security is an issue?

Share your thoughts in the comment box below.