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PHRS, PORTALS AND APPS:
HEARING THE PATIENT’S VOICE The current medico-legal record provides a snapshot into specific episodes of care for patients, but it does not provide a holistic view of the person’s full health history. Different records can be brought together into one album like the PCEHR, but to truly hear the patient’s voice, we must extend this to include information gathered through emerging technologies such as portals, health apps and personal health records. DR KAREN DAY PhD, FACHI School of Population Health The University of Auckland k.day@auckland.ac.nz
What is the patient’s voice? How do clinicians know we are hearing this voice? And how do we know we’re responding appropriately, safely, ethically, and effectively? Doctors get six- to 15-minute sound bites into the lives of their patients, and nurses may get a little bit longer, depending on the context, but this only provides a glimpse into the lives of patients rather than a long-term view. What if our healthcare interactions were depicted as a 450-picture album? The official healthcare record contains snapshots of care, much like a photo album contains sets of pictures taken by one or two people. Only a partial story exists for the reader. If an adult uses health services on average about five times a year, multiplied by 65 adult years, then we have an album of around 450 pictures.
About the author Dr Karen Day is a senior lecturer in health informatics at the University of Auckland’s School of Population Health and director of its postgraduate health informatics program. She has a research interest in personal health records and how people who become patients use health information.
These pictures tell short stories about each individual interaction between a person and the health service they use, but the stories are rarely connected. Most commonly, the connection is a referral from one clinician to another. Measurement and feedback create a continuous story of improvement and change for clinicians and patients alike. People like measurements. We measure our body dimensions, the food in recipes,
the shopping we do, the money we earn, our educational progress, our health. Clinicians are taught how to do these measurements systematically and use them to apply interventions to improve the health of our patients. Recording the healthcare conversation – hospitalisations, outpatient consultations, primary care visits – is usually one-sided. Clinicians are required to document the conversation and action plan for medicolegal reasons, but patients are not. This silences their voice. There appears to be a cultural paradox in which we expect clinicians to take notes and patients to memorise what happens in the snapshot episodes of their healthcare experiences.
The quantified self Joining the snapshots in the album of life and health into a single, articulate story is possible but difficult. As clinicians we represent the patient’s voice in our clinical notes and care plans, the documentation of lab test results, diagnostic images, and medication prescriptions. What if we could take these snapshots and expand their reach into the patient’s space? One of the first steps is to let patients hear the clinicians’ voice more clearly by providing access to medical records