Getting people more involved in their own health and care is Marlene Winfield’s driving ambition, and she believes NHS Connecting for Health is a major step forward.
Working as head of public engagement for the agency delivering the National Programme for IT, her enthusiasm is clear.
“Not many people have yet thought about what NHS Connecting for Health means for them, but in the future that is bound to change,” says Marlene.
“It will make a difference to how they are cared for – and how they care for themselves. That’s why we are so determined to keep talking to people, to make sure we know what they want.
“We organise events which bring people from the National Programme together with patients and the public. We keep a record of all the questions that are asked, answer the ones we can, and circulate notes of these sessions to relevant people within the organisation. In an undertaking like this, where there are difficult compromises to be made, it is vital we stay in touch with what the public want.”
The National Programme will introduce an electronic health record for every patient under the NHS Care Records Service (NHS CRS). It will make knowledge and information available to people to improve their own health and in the NHS to improve people’s care and safety.
Working closely with the public, Marlene and her team see certain issues coming up regularly.
In the future NHS, all patient health records will be computerised and instantly accessible to healthcare professionals all over the country, and in summary version to patients themselves. Of course the public want to know who will be able to see their confidential information. But an equal concern is how we will ensure that noone is excluded from benefiting from the changes.
She has fielded concerns about how non-computer literate people will access their records, how information will be shared quickly when needed, how records will be moved from the current system to the new, and how much control a patient will have over what is available to whom
All these concerns show, Marlene believes, that people are gradually realising the significance of the changes that NHS Connecting for Health is working to deliver.
“We’re seeing people at the consultation events really start to think about what it will mean for them. Those who are really curious will come up with their own answers, and that will help us.”
Reaching the curious and spreading the word is why Marlene is leading a 20-stop roadshow around the country.
“We will be putting on demonstrations so the public can see what the new services will look and feel like, and we can see their reactions and hear their views,” she says.
“The roadshows will be slightly different in each area, using local people to explain the changes and decisions people will need to make. They will be tailored to meet the needs of the people who live in the area.
“And they will focus on what it all means for the public rather than trying to explain the technology behind the systems.”
Marlene advocates transparency in record keeping about patients – a key measure in ensuring public confidence in the sharing of patient information.
Her motto is ‘no surprises,’ which means that nothing that happens to a patient’s information should be unexpected.
Her background emphasises her commitment to transparency and to public involvement. Before joining the NHS, Marlene was head of policy research and strategy at the National Consumer Council, working particularly in the areas of data protection, freedom of information, and civil justice.
She advised on radical reforms to make the civil justice system more accessible to citizens, and was a member of the minister’s IT strategy group at the (then) Lord Chancellor’s Department.
She also chaired the litigant information sub-committee of the Civil Justice Council. She was made an OBE in 2000 for services to civil justice reform.
While her work in civil justice was good preparation for her current work, she has to admit that the scale and complexity of these health reforms is a “once in a lifetime” challenge.
