This document outlines a strategy for linking patient information across multiple sites of care, developed by the Working Group on Accurately Linking Information for Healthcare Quality and Safety, a part of the Connecting for Health effort sponsored by the Markle Foundation and the Robert Wood Johnson Foundation.
The linking of vital information as patients receive care from a fragmented healthcare system is a problem that has consistently plagued interoperability efforts in healthcare. The privacy, technical, and policy issues involved need to be addressed in order to effectively share information across multiple organizations. Making the information available will help to prevent drug interactions and adverse events, avoid medical errors, and help inform decision making for the patient and clinician. It will also enable the support of public health efforts, improvements in research, better physician and organizational performance and benchmarking, and greater empowerment of patients and families as active participants in their own healthcare, among other benefits.
The linking problem is simple to describe but hard to solve: how does a healthcare professional link a patient with their health files, and how do they know that any two files stored in different places refer to the same person? This problem occurs every time a care provider asks to have a patient’s file pulled or updated, and every time a patient moves or changes doctors, visits a new lab or specialist, or falls ill while traveling. At its core the linking problem is one of identity — how can we say for sure that a patient in the office is to be matched with a particular set of records, or that two sets of records can be merged because they belong to the same patient?
The goal of the Linking Working Group was to address these issues, proposing practical strategies for improving healthcare through improved linking of information in a secure and efficient manner, and in a way that allows healthcare professionals much improved access to needed information while respecting patients’ privacy rights. Additionally, we assumed that our proposals would be implemented in a five-year time frame, with the additional assumption that any test bed or pilot project implementations would therefore have to be ready in between one and three years, depending on the complexity of the problems to be worked on. We thus focused on techniques for record linking already in use in other areas, rather than on the design of entirely new methods.