In this series, people doing leading work with patients, families and carers talk to patient champion and charity leader Jeremy Taylor. This week: Dr Amir Hannan (@amirhannan), GP at Haughton Thornley Medical Centres, Chair of the Association of Greater Manchester Local Medical Committees, and Chair of the World Health Innovation Summit.  

What have you done?

Since 2004 I have been helping my patients gain full access to their GP electronic health records, including the free text showing what the doctor or nurse have written. This helps patients better understand their conditions and how to manage them.

When I started, sharing information with patients was seen as scary. Patients wouldn’t understand it, they would find something terrible, they would see confidential, third party information, GPs would get struck off, etc etc. Many colleagues still worry about this.

So I created a consent process – a safety checklist which we take patients through, so that we are all better prepared for the consequences of getting access. Equally important, with my colleague Glen Griffiths, I built an award-winning practice-based web portal www.htmc.co.uk which signposts patients to trusted information.

As many as 70 per cent of our patients now have access to their records, or more than 9,000 patients. That includes 97 per cent of our pregnant women, 94 per cent of our patients with type 1 diabetes and 83 per cent of carers. Patients can also book appointments, order repeat prescriptions and send two-way secure messages online. These figures make us very much an outlier compared with the rest of general practice.

What was your motivation?

I took over Harold Shipman’s former practice. My first priority was to regain trust. Shipman had falsified records to hide his murders and I wanted to demonstrate to our patients that we would share what we were doing and had nothing to hide. I started to turn my screen around so the patients could see too. It felt ground-breaking – a real turning point and an opportunity to rebuild trust.

Records access sprang from that. I collaborated with Dr Richard Fitton and Manchester University in research showing the benefits of giving patients their health records downloaded onto a disc. Patients really valued it and I began to see how records access, and the understanding it fosters, are an important component of self-care, managing long-term conditions and partnership working. An important context is that my practice is in Hyde – a deprived neighbourhood where people die 10 years younger than in more affluent places.

As we extended access, I was determined not to widen health inequalities. For example, early on I realised Bengali patients were not registering for records access. I put in systems of support and now 83 per cent of our Bengali patients have records access, higher than our average rate. And 50 per cent of our patients with learning disabilities also have access to their records.

How were patients and families involved?

This is all about empowering staff and patients through partnership working. Taking over Shipman’s practice I was acutely aware of doctors’ power. It’s very difficult for a patient to challenge a doctor. That’s why I set up our patient participation group. Under the excellent chairmanship of Ingrid Brindle it has become incredibly important and was voted the best PPG in the UK. It keeps me honest and accountable, reinforcing the accountability I face in the surgery to individual patients.

What was the impact?

We have been rated an outstanding practice by the Care Quality Commission, who cite our approach to records access, patients’ understanding and our PPG.

We know it benefits both patients and staff. Patients love it. The nurses who work closely with patients managing long-term conditions also love it.

We had a whole cohort of worried patients who kept coming back to the practice for reassurance and they stopped booking appointments as they got used to going back to their records to read the previous advice.

Professor Chris Ham visited the practice last year and blogged about it. In his words “I was left puzzled as to why all practices aren’t yet working in this way”.

What have you learned?

We can enable patients to have full access to their electronic health records and the information and understanding that comes with that. We can do this at scale. It works, it has benefits and it’s safe.

Patients rarely ask for access to their record, because they don’t understand the benefits till they try it. It’s my professional role to invite them. If you like, I am prescribing records access as part of a broader approach to shared decision making and helping patients to understand why, rather like advising people to stop smoking or cut carbohydrate in their diet. That’s why records access is a clinical responsibility, not an admin task.

I would never have anticipated so much resistance to this agenda. But in 15 years I have encountered no serious problems in sharing data with patients.

What next?

Latest ONS data shows that 91 per cent of adults have recently used the internet. As many as 83 per cent of people aged 65 to 74 are recent users. The frontiers for records access have completely changed.

In that context the current access strategies have failed. Only 7.8 per cent of patients are registered to read detailed coded records online. That doesn’t even include what the doctor or nurse has written.

I have struggled to enthuse GP colleagues and I don’t blame them. They are exhausted seeing patients and maxed out during working hours. They don’t have the staff or time to process records access requests. Even I have had to process most of my 9,000 patients myself, generally in the evenings and at weekends.

The fundamental problem is that records access is not a priority at the top. It needs to be in the GP contract and it needs dedicated funding: not new money but diverting funds from lower value activities like extended GP opening hours. I’m enormously encouraged by the recent decision by Oldham Clinical Commissioning Group to provide pump priming funding to GP practices for full records access. This is a first and, I hope, the start of a trend.

What is your message to HSJ readers?

To sustain the NHS, and preserve trust, we have to work in partnership with our patients and carers. Ensuring that patients have access to their records is a key part of that.

The past What about the patient?

David Gilbert

Annie Laverty