C3: From transparency to collaboration – taking patient accessible records to the next level

Thursday, 3rd May

In this workshop, we will discuss early experiences with co-production of the health record. How can patients contribute to their notes, and what are the benefits and drawbacks of different approaches? We will briefly present experiences from the Swedish patient accessible EHR (PAEHR), OurNotes (US), and PatientsKnowBest (UK), following them with interactive discussion in smaller groups. The goal will be to identify critical elements in the co-production of records and to develop strategies for maximizing benefit.

After this session, participants will be able to:

  • Describe different approaches for co-production of health records

  • Discuss the benefits and drawbacks of different approaches

  • Critically analyse benefits in different contexts

Maria Hägglund, Senior Researcher in Health Informatics at Karolinska Institutet, Stockholm; Sweden
Mohammad Al-Ubaydli , Patient with Hyper IgM syndrome, and CEO, Patients Know Best; UK