The ethical dilemmas of EPRs are
Coming out of a West End play with a tear in your eye or a grin on your face isn’t unusual. But Sarah Bruce wasn’t expecting to feel so emotional at the end of a play about the use of electronic patient records in the NHS.
I recently stumbled across the events page of The Royal Academy of Engineering website – and one of the strangest initiatives I’ve yet encountered during my time writing about healthcare IT.
Coming at the end of a Google search related to a news story, I wasn’t expecting to find a listing for a play addressing the issues behind the Electronic Patient Record.
It wasn’t something that E-Health Insider could miss, though. So I headed off to meet one of the organisers, Dr Lesley Pearson, at the Wellcome Trust where the play was being performed for stakeholders for one night only.
Dr Pearson, head of public engagement at The Royal Academy of Engineering, told me that the play, called ‘Breathing Country’, is a £250,000 project that has been touring the country. The script by Ben Musgrove aims to engage teenagers aged 14-18 about EPRs, which are in the process of being rolled-out nationally.
“The whole idea is to raise awareness for young people about electronic patient records and find out from them about their issues and concerns,” he explained. “The London tour of the play has lasted eight weeks, with two performances a day, and has been incredibly successful.”
Performed by the Y-Touring group, a branch of the health charity Central YMCA, the play follows the fortunes of a teenage couple, Simon and Lizzie, who are caught up in a world where technology has taken over.
Simon is a technology geek who is forever updating his status on social networking sites, while Lizzie has isolated herself and is secretly struggling with mental health problems following the suicide of her mother.
To avoid the awkward subject of his wife’s death, Lizzie’s father has thrown himself into his job of promoting the EPR, as head of communications at the Department of Health.
Lizzie reacts furiously when she realises that her closely guarded secret is not as safe as she thought when she is asked to take part in an NHS mental health study as a result of her EPR being shared electronically.
But the researcher she confronts is a GP who helps her with her anxiety attacks. And despite having a USB stick with her medical records stolen by Simon, who is desperate to find out what is wrong, Lizzie finally comes to terms with her mother’s death.
The tour, which is funded by the Wellcome Trust, Medical Research Council, Engineering and Physical Sciences Research Council, Central YMCA and the Economic and Social Research Council, is part of a wider drive to get the public actively engaged in the project.
“We assume that young people aren’t bothered by privacy and are all part of a big brother generation when in actual fact they are really impassioned,” Dr Pearson explained.
“Kids want a partnership contract with the NHS. They don’t want to see electronic patient records as signing their life away, but when they are told that in return for their medical records they can help with medical research or receive better care they are much more positive.”
Collecting information for the record
Each performance is followed by a series of debates. At the beginning of the play, the audience is given an electronic voting handset and asked a series of questions designed to gauge their attitudes towards EPRs and sharing information with medical research bodies.
They are also invited to ‘hot seat’ the characters (ask questions of the actors in character). Focus groups are also held and young people are asked to write a review as a critic.
Feedback will be collated and disseminated to policy makers and public health organisations, including the DH, the NHS Research Council and NHS Connecting for Health, at a two day conference in March 2010.
Dr Marlene Winfield, director for patients and public at CfH, who was seeing the play for the second time in as many nights at the Wellcome Trust production, told EHI: “It’s an absolutely brilliant way of getting people involved.
“By the end of the plays, a lot of the children who may have been skeptical at first were saying that they, as teenagers, felt that they had a responsibility to the people that come after them to learn about the records.”
CfH has been an advisor to the play right from the beginning, generating ideas, briefing the cast and the playwright on systems and the risks and benefits they present, and then reading draft scripts and making comments.
“We will be using this, alongside other feedback, to inform policy over time around what sort of choices to offer both teenagers and adults,” Winfield added.
Sex, drugs and EPR
The performances have been so successful that the tour will continue nationally from the beginning of next year, with the intention of reaching between 10,000 and 15,000 young people across the country.
Nigel Townsend, executive director of the Y-Touring theatre group, said: “It’s a rich mix of combination with experts in the area of science and experts in the area of theatre. Plays that tour schools tend to be about sex, drugs and rock ‘n’ roll this is a very different.”
One of the critic reviews, written by a teenage girl from Sutton Grammar School said: “Before today I probably wouldn’t have even thought about my medical record until I was 18. The whole Breathing Country experience was amazing and really helped me and I am sure plenty of other people will spend more time thinking about the important issue of medical research.”
Pearson added: “They said it couldn’t be done, but we’ve done it. Even I’ll admit that it can sound like a dry subject, but working together we’ve really turned it round and made it into something that everyone can enjoy.”
And when I found myself as part of the standing ovation at the end of the performance, I realised she could be right.