Article Text

Download PDFPDF
49 The use of patient-held records by children and young people managing a health condition: a realist review of the literature
  1. Janet Diffin,
  2. Bronagh Byrne and
  3. Peter O’Halloran
  1. Queen’s University Belfast, Belfast, UK


Introduction Patient-held records (PHRs) are proposed to improve communication and coordination of care amongst young people with life-limiting conditions their families and health professionals. However implementation of PHRs has proved difficult due to technical organisational and professional barriers.1

Aims To identify the factors which help or hinder the use of PHRs by young people with life-limiting conditions.

Method Systematic realist review. Literature was sourced from six databases: Medline Embase CINAHL PsychInfo The Cochrane Library Science Direct (from 1946 to December Week 1 2016). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme (CASP) tool.

Results Nine articles were included each reporting on a different PHR. Young people (and/or parents/carers) with conditions of higher severity requiring ongoing care more medications and frequent appointments with multiple providers were more engaged with the PHR. Service providers need sufficient knowledge about the PHR and organisations need to ensure staff can see the benefits of using the PHR for implementation success. Mechanisms triggered by the PHR included improved self-advocacy and young people becoming empowered to self-manage their condition.

Conclusion Clear definitions of which young people would benefit from using a PHR must be established in order to direct resources accordingly. These definitions will help inform which organisations and service providers would see the most reward from PHR implementation.


  1. . Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: A scoping review. Journal of American Medical Information Association2011;18(4):515–522.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.