What is Patient and Family Engagement?

I recently participated in a nationwide (not the United States) healthcare IT planning effort and one recommendation was universal availability of patient portals.  Several reviewers commented that patient portal is a loaded term - it implies that clinicians control the data and patients are given a view into it.  One person said, “that’s so 10 years ago”BIDMC has been working with patient/family shared medical records, Open Notes and various consumer-facing apps since 1999.   Over that time we ' ve discovered that patients typically do not want raw data, they want something actionable - the tools necessary to assist their navigation through the healthcare process.A few years ago, Adam Bosworth, the leader of Google Health and later KEAS, met with me to explain his journey with patient and family engagement. He spent a few million in venture funds to build a website that helped patients understand their lab results.  Patients visited once and never again.  He then spent a few million creating online care plans. Patients visited once and never again. He then spent millions creating a social network for healthcare that enabled teams of people to come together to support each other ’s wellness.  That worked!Our challenge is that we do not know precisely what patients want. It would be hubris for any IT leader to speak for all patients.  We need to try many different technologies and let the patients de...
Source: Life as a Healthcare CIO - Category: Information Technology Source Type: blogs