Record takers

NHS North has just months until it ceases to exist as part of the latest round of reforms to the health service. 

In the limited time it has left, it is giving priority to spreading the message about the importance of patient access to records, which has become an increasingly firm government priority.

The NHS Commissiong Board’s first planning guidance, out this week, not only reiterated the government’s pledge to give patients online access to their primary care record by 2015, but promised a consultation on further developments. 

‘Everyone counts: planning for patients for 2013-14’, pledges that a consultation will start by June on "plans for the provision of patient access to interoperable recorrds across the pathway of care." 

The NHS CB presents these developments as part of wider plans to improve the transparency of the NHS and to make it more contenient for patients – "a world class customer service."  

However, a packed conference run by NHS North in partnership with the North West Health Informatics Leadership Network (HICAT) also stressed the benefits for clinicians of giving patients access to records.

The more than 300 patients, clinicians and NHS managers who packed the event earlier this month were also able to take part in many practical workshops on how to make a start in a practice, hospital or clinic.

Empowered patients “can change the world”

The star of the event was Dr Amir Hannan, long-term champion of patient access, and his patients; who told their stories about why controlling their record matters to them.

Dr Hannan that the ability to jointly refer to a record shared record helped build up trust and partnership between a clinician and a patient.

"When a patient comes in for a consultation she is trusting me to offer the best medicine can offer, and I’m trusting her.

“If we can look at the same information on Map of Medicine, showing the best care pathway commissioned locally, and that is available on Choose and Book, we move into a ‘partnership of trust’ – which is a very exciting place to be."

Engaged patients, who read their records, view test results and manage aspects of their care online, are more likely to change their behavior, he added.

“I’m seeing people in early teens adopting behaviors that will lead to heart disease and strokes. If they could see what is being written about them might begin to make healthier decisions.”

In fact, he predicted that even bigger changes could be brought about. “A small group of thoughtful committed citizens can change the world,” he said.

"The next future wonder-drug will be the empowered patient, empowered clinician and empowered manager."

“Take the torch back to your practice and make a start on patient access to records,” was Dr Hannan’s rallying cry to the audience.

Patient support

Yvonne Bennett, secretary of the Houghton Thornley Medical Centre’s patient participation group, which covers the Hyde practice where Dr Hannan has been providing records access for seven years, told her own story.

She said that as a patient with a long-term condition she had benefited from being able to access her record over the past six years.

She said benefits included: patients being able to order prescriptions online, book appointments, check results, find accurate information on results, and develop a partnership with GPs.

Record access can carry problems

But patient access records is not without problems, which need to be managed, said Bennett.

“These can include forgotten history contained in the record; bad news and abnormal results; and how to handle third party information, particularly on children.”

She added: “You may not agree or like what has been written about you, and it might leave you feeling worse than before.”

However, she said with proper planning and support most of these problems can be anticipated and managed. Hyde has published a series of guidelines available online.

Bennet also said that local health professionals were starting to see the benefits of opening up access to patients; if only because it meant that they "show up with the right information." 

Her point was echoed in a video clip from Margaret Rickson, 84, who told how she got online access to her records in 2005 – after buying a laptop to practice what she was being taught in the computer lessons she’d signed up for at the local library.

“Every time I went to hospital the records went with me online," she said. "The doctors and nurses were really pleased as the information came with me."

On one occasion, those records meant that an operation wasn’t cancelled when the hospital lost her notes.  

“I went in for pre-op and they couldn’t find my hospital records. I said: ‘Don’t worry I have my own records.’

"The pre-op was done of my records, which meant I didn’t have to come back another day. So you can see why I prefer to do everything online.”

“It made me feel really good and proud,” she added. “You can get your letters so you don’t have to rely on the doctor and you can find out the truth.”

Being name checked by Hilary Clinton

Such a can-do approach has helped Mrs Rickson become a celebrity. She was mentioned by the new national director of patients and information, Tim Kelsey, at a US event that was attended by Hillary Clinton, the US secretary of state and wife of former president Bill Clinton.

“I couldn’t believe an x-president’s wife was talking about me in America of all places,” said Mrs Rickson (whose video is embedded below).

Jacqueline Gladwin, a nurse, principal lecturer at Manchester Metropolitan University in nursing, and patient at Hyde with a long-term condition said: “I think access supports patients to understand their care and records.”

She said MMU is now teaching nursing students how to use shared records to build partnerships with patients. “The record shouldn’t be a secret code – it should be a true patient clinician partnership.”

Gladwin said her first reaction five years ago was lots of “what about” and “ifs”. “It was only once I got access to my records that I really saw the value."

She added: “As an A&E nurse, there have been many times when we have been working in the dark – having a medical history and details of medication would have speeded up care and enabled us to give more more effective care to patients.”

Really, really urgent access

“Dr Hannan recalled how he’d received a call from an overseas doctor who had admitted one of his patients, and didn’t understand the patient was now asking him to call up his record online.

“He wanted the doctor to call up the record to see he’d had a quadruple bypass – that is urgent and emergency care.”