This is an unusual example of a system built by a couple of NHS organisations in one nation – health boards in Scotland in this case – which is then adopted by units across the UK.
This article titled “Open source test results service adopted by renal patients” was written by SA Mathieson, for theguardian.com on Friday 4th May 2012 08.59 UTCPatients of 53 renal units across the UK are accessing results and clinical letters through a secure online system, often meaning they get the information faster than their GPs.
Renal PatientView is used by 19,000 patients who have opted-in to accessing their results online. The system also lets patients add their own data – such blood pressure – access online information about their condition and is being adapted to allow them to pass comments on their care back to hospital units.
Dr Keith Simpson, consultant nephrologist at the Western Infirmary in Glasgow, told the HC2012 conference in London that data is extracted from renal units’ systems every six to 24 hours, depending on its importance. It is sent in encrypted form across NHS networks to a secure online server for patients to access. “The patient will normally see this before their GP,” he said, as renal units do not generally send results and letters to GPs electronically.
The system, which was launched in 2005 and developed by staff from Glasgow’s Western Infirmary and Edinburgh’s Royal Infirmary, runs on open source software available for others to use. Units pay a fee to join, while it is free for patients. A similar system for bowel disease patients, using the software, will start this year.
Simpson said that many users log on to the system on the first day following a test, and a substantial number do likewise, just before an appointment. “Doctor may want to take note of this,” he said. “Patients are very well-informed, and want to take part.” Users tend to log on during work days, rather than weekends and bank holidays.
The system requires just a username and password for access, but Simpson said that research with users found that very few were concerned about security, that 40% shared their passwords with other people and that many thought the data should also be used for research.
He said that future plans for the system include allowing records to be transferred between different participating renal units, linking to primary care systems such as Scotland’s emergency care summary and England’s summary care record, and functionality for rare diseases. So far, no work has been done on whether it improves clinical outcomes for patients.
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