The Summary Care Record (SCR) and HealthSpace technologies have so far demonstrated only modest benefits, according to the final report of a three-year independent evaluation carried out by UCL researchers.
The report authors found that while millions of people had received a letter informing them about the programmes, the creation of SCRs and HealthSpace accounts was occurring much more slowly than originally planned.
Progress in the programmes was delayed by a number of problems, including the difficulty of defining a “minimal dataset” of key medical data, the huge task of ensuring that GP records were complete and accurate, the need to gain informed consent from 50 million people (many of whom appeared to throw away the letter unread), and the numerous technical and operational challenges associated with uploading data onto the SCR database from local GP records.
The report authors conclude that the fortunes of the programmes will depend at least partly on efforts to bridge “deep cultural and institutional divides” that have so far characterised the National Programme for IT (NPfIT), and suggest that it may be time to revisit the logic behind the policy-level link between “empowerment” and a state-run online records service.
Lead author Professor Trisha Greenhalgh said: “This research shows the significant benefits anticipated for these programmes have, by and large, yet to be realised – and that they may be achieved only at high cost and enormous effort.
“When we did find them, they were subtle, hard to articulate and difficult to isolate. It serves to demonstrate the wider dilemma of national databases: that scaling things up doesn’t necessarily make them more efficient or effective.”
Professor Greenhalgh said the report is “the culmination of three years’ detailed and careful academic work and we hope that the new government will look carefully at our findings before decisions about the future of these schemes are made.”
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