Feature Patient Records

Flipping the model for access to patient records

BMJ 2016; 352 doi: https://doi.org/10.1136/bmj.i722 (Published 09 February 2016) Cite this as: BMJ 2016;352:i722

This article has a correction. Please see:

  1. Ben Adams, freelance healthcare journalist, Chichester, UK
  1. benjohnadams26{at}gmail.com

Lack of progress in NHS England’s efforts to provide universal access to medical records has led to the development of independent initiatives, reports Ben Adams

In 2012, amid growing pressure for patients to be allowed to participate more in their own care, NHS England promised to make full medical records available to patients in an easy, online format by 2018. But four years on, little progress has been made. Some patients can now register with their GPs to look at their records online but they find only partial information.

Yet while the NHS has struggled to overcome issues of confidentiality and security as well as technological challenges, a small and nimble company has jumped into the void. Patients Know Best, which was set up in 2009, has created a simple online tool that relies on patients to pull together all the health information that they and their carers need to see. Initially designed for patients with complex medical conditions, Patients Know Best reports that it is now the patient record system of choice for 60 NHS organisations, including leading hospitals such as Great Ormond Street.

With the threat of competition, can NHS England still deliver on its promise to provide a universal medical record system that people can trust? Or will the job ultimately be done by patients using their phones and tablets and technology designed and run by organisations the NHS does not control?

Why has the NHS failed so far?

Since its launch in 2012, care.data, the project to overhaul NHS England’s information technology and infrastructure has run into myriad problems and embarrassments,1 including concerns among patients and GPs about confidentiality2 and security. It has also struggled to identify IT systems that could cope with the complexity of the NHS, the largest employer in Europe with over 1.3 million staff.3

The project …

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