about them via a portal and medico-legally approved processes. However, the patient’s voice remains silent unless we lift our gaze to include the ‘quantified self’. The quantified self is a description of the recent movement in which people measure their activities and their body’s responses using sensors, apps and wearable computer devices, amongst other things. People are able to see their own patterns and baseline measurements change. They can develop strategies for prevention and early intervention when the patterns change. As technologist Melanie Swan points out in a 2012 article in the Journal of Personalized Medicine1, this could radically change how people use health services, resulting in a more competent patient voice and more coherence of the patient’s story in the health record. Portals give patients license to view their 450 health snapshot album. PHRs encourage the addition of annotation and supervised self-monitoring2. On the other hand, as Swan shows, apps and sensors can mimic real life and offer the benefits of the quantified self.
Patient at the centre It’s no secret that there are barriers to overcome. The technical skills required for decision support, data mining (especially big data) and just getting the software right are barriers to hearing the patient’s voice, and privacy, security, ethics and safety are further challenges. Regulation in the interest of patient and clinical safety can slow down the pace of innovation and further mute the patient voice, as is seen in the Whole System Demonstrator project in the UK, and lack of interoperability silences the voice altogether, when content in one service cannot be shared with clinicians in another service.
“Once we open the recorded clinical interactions in the medico-legal record to the patient’s voice, the questionanswer-decision mode of a consultation or hospital visit could change into a discussion-negotiation-decision-action mode.” Dr Karen Day
A two-way conversation in the medicolegal record should place the patient voice in the centre of healthcare, as an extension of person-centred care and personalised healthcare. Once we open the recorded clinical interactions in the medico-legal record to the patient’s voice, the questionanswer-decision mode of a consultation or hospital visit could change into a discussion-negotiation-decision-action mode. Clinical care could become less about problem solving and more about supervision, coaching and monitoring so that people can live well with long-term health issues. The quantified self could represent the mutual development of capacity for preventive care and health promotion, where clinicians may be able to build wellness interventions that people download onto their phones and use ubiquitously. Specific self-care for identified longterm conditions can become part of the background conversation between clinician and patient as people live well with health issues that don’t go away.
The future is now. The technology is available and ubiquitous. People with long-term conditions want to live well, while keeping their health issues in the background. The potential of two-way conversations in the medico-legal record is only beginning to become visible in a way that can convert the snapshot album of episodic care into a life-long continuous video representing lives well-lived. The patient’s voice is crucial for the future of clinical practice. How we go about inviting that voice into the medico-legal record via portals or PHRs or apps is up to both patients and their clinicians.
References 1. Swan M. Health 2050: the realization of personalized medicine through crowdsourcing, the Quantified Self, and the participatory biocitizen. Journal of Personalized Medicine. 2012;2(3):93118. 2. Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: Definitions, benefits and strategies for overcoming barriers to adoption. Journal of the American Medical Informatics Assoc. 2006;13(2):121 - 6.
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