Healthcare has grappled with a difficult binary through much of its recent history – patient information can be used to improve outcomes for all, but retrieving, analyzing, and possibly publishing this information creates serious privacy concerns. The response has typically, and appropriately, been to err on the side of privacy, collecting and reporting patient information only with express permission.

Part of the problem was that there were a limited number of avenues for sharing this information, and it was often shared with healthcare providers rather than other patients. Many patients expressed a desire to connect with others suffering from the same condition but were passed off instead to clinical medical settings whose business was science rather than sympathy.

With the advent of the Internet, and social media specifically, traditional expectations about patient information/privacy are beginning to evolve. Just consider this data revealed by a recent study of online surveys conducted by several research organizations.

  • 94% of respondents would share information about their condition to assist doctors.
  • 94% of respondents would share information to help patients with the same condition.
  • 84% of respondents would share information with drug companies to develop safer products.

At the same time, respondents expressed some trepidation about releasing medical information about themselves.

  • 76% were concerned it could be used without their consent.
  • 72% were concerned it could be used to deny them health insurance.
  • 66% were concerned it could be used to deny them a job.

These surveys, while hardly authoritative, underscore an area of focus that will require the expertise of HIM professionals in coming years. Patients know their personal medical information has value, but they want to know that information will only be used to improve healthcare and not hurt their own state of affairs.

Satisfying both concerns will take a new system for patient engagement and reporting – something like a social media site. Patients want to share their experiences, but only in a setting that gives them control over privacy. Building such a community and turning it into a true opportunity to create a “learning healthcare system” is a responsibility that falls on HIM professionals. Without the necessary technical expertise, there is no way to ensure privacy while still extracting the necessary information.

Clearly, this is a developing concept still needing lots of study. But the potential is just as clear. It’s incumbent on all healthcare stakeholders to invest the necessary time, intellectual capital, and financial resources if it is ever going to become a reality. Connect with the expert recruiting team at MedPartners HIM to find the professionals that can make it happen.