‘Who Sees What?’

National consultation on electronic patient records

Have you ever wondered how your personal health records are stored and who has access to them? Do you want to know more about how things might change as the NHS shifts to a system of electronic records?

Now is your chance to learn what the NHS plans to do with your personal information, and to let the government know what you think. Patients, carers, health workers and members of the public are being invited to have their say through a six-month national consultation, organised by the New Economics Foundation, from September 2009 to February 2010

The new national system of patient records is being developed as part of the National Programme for IT in the NHS (NPfIT) – an initiative launched in 2002 to improve, integrate and make the best of a variety of different and often incompatible IT systems in place at that time. But electronic patient records may take many different forms and exist in many different places – from huge national databases to local systems kept by GPs’ surgeries.

For many, electronic patient records promise to be a big step forward. They offer hope of extending the joined-up management of healthcare, improving efficiency, facilitating breakthroughs in medical research and giving patients more say in how their healthcare and their records are managed.

Others, however, are more critical. The NpfIT has been criticised as costly, badly managed and overambitious. The project is significantly over budget and behind schedule. Critics express concern about the potential for personal and sensitive information to be misused or even to fall into the wrong hands, citing incidents of personal data being lost or mislaid by government departments and financial institutions. The Conservatives have pledged to scrap the national patient records database if they win the next election.

The issues around electronic patient records are complex. How do you make sure that doctors and nurses have quick access to the information they need to do their job, without endangering privacy? How do you share information to help researchers improve their understanding of healthcare without risking the trust between doctor and patient?

The consultation will use an innovative ‘conversation game’ that will let people across the UK hold their own discussions and feed the outcomes back into the national debate. The game is made up of information cards that highlight key facts, issues, opinions and dilemmas about electronic patient records. The project organisers are very keen to have local Rheumatoid Arthritis groups take part by ordering a free copy of the game kit and playing it with their members.

The kit contains everything that you need to run a discussion about electronic patient records. After the game, the organiser can feed back a record of members’ views to the project so they can form part of a report to key figures in the NHS, in government and in medical research.

To find out more, visit the project website: www.whoseeswhat.org.uk. You’ll find details of how to get hold of the game and more information about the project and about electronic patient records.