Can social enterprise revolutionise the way NHS patients’ records are stored?

There is a lovely write-up today in the Guardian, a UK national newspaper, about Patients Know Best. The article is by Tom Cropper from ClearlySo, who a month ago notified us that we were the 2,000th social enterprise to be listed by ClearlySo. Another example of the good fortune and support we receive every day from people who want to help.

The article appears in the Guardian’s new section, focusing on social enterprises. Like many social entrepreneurs, when I started out I did not know that what I wanted was called a social enterprise. It was UnLtd who taught me. They were the first to back us, and they explained how there was a new way to create sustainable benefits to society: we could build the profits of a social enterprise to focus on improving patient care. Since then, UnLtd has given us awards, mentorship and publicity, as well as grants. I recommend that everyone considering starting something that helps society contacts them. They will always help you get closer to your goal.

Can social enterprise revolutionise the way NHS patients’ records are stored?

Over a lifetime each of us will meet a plethora of health professionals, many making notes about our health in a separate file. A new social enterprise aims to make sure that every record is stored in the one place online

district nurse making a home visitPhotograph: Bubbles Photolibrary / Alamy

When Cambridge based GP Dr Mohammad Ubaydli arrived for his interview for medical school, he announced that he did not intend to practice medicine. Instead, he aimed to become “the doctor who would learn about computer programming” and show how technology could help medicine.

The result was Patients Know Best, a pioneering online platform that places patients at the heart of their own treatment. The website provides patients with full access to medical records without compromising privacy and allows them to connect with clinicians all over the world. It is, as he wryly suggests, “a little like Facebook, but without the privacy issues”.

How does Patients Know Best Work?

We allow patients to take control of their medical records and to work with clinicians anywhere in the world. They can send data from home and can work with their clinical team online. The best thing about it is that it puts patients right in the middle of the process.

Where did the idea come from?

The idea came from the story of a US doctor Jim Jirjis. A patient identified a problem that had been over looked in his original report. Had it been left untreated it could have led to cancer. From then on he insisted his patients had access to their medical records.

It’s also an issue I’ve encountered. I’ve suffered from a genetic disorder since birth. In my treatment I often found that my clinicians asked me what to do next – not because of my medical training, but simply because I was the only person who was present at all the meetings. Because the various doctors I worked with were not in contact, I would waste valuable time updating them on progress so far. To me, both these stories illustrate the crucial role patients can and should play in their own treatment.

What challenges did you face setting it up?

The problem with most government IT infrastructures is that people tend to grow them from scratch. In doing so, they repeat all sorts of mistakes. I built on research and work that had already been done. When it came to creating Patients Know Best, the systems for holding patients records were already in place. I just had to take it on to make it more usable, building the entire system around the patient.

How has the social enterprise community helped?

I had never heard of social enterprise until I came to the UK. Once I found out about it, I realised that this was the perfect structure for Patients Know Best. We received early funding from Unltd [] and we also got a timely boost when we became the 2,000th listed business on ClearlySo.

Aside from access to capital, these organisations offer the ability to interact with their networks of social businesses and enterprises. This is a vibrant community, which is a real strength of the sector. We’ve already had a number of new users who have joined directly because of the mention from ClearlySo.

Being a social enterprise also provides reassurances over data storage. If a large corporation takes on this job patients will always be suspicious as to how their details will be used. It is important that we make it clear that we do not misuse any information. Being integrated within the NHS has been crucial in providing that level of reassurance.

We’re also partnering with a number of charities, including the Thalidomide Trust, Cure Parkinsons and the Genetic Alliance campaign. Some have offered their support to our ‘My Health My Records Campaign’; others have actually paid for patients to be given access to the service.

We hear a lot about social enterprise and its role in the future of NHS. How do you think it can help?

I love the NHS. It’s full of amazing people working long hours because they are committed to doing the best they can for their patients. The adoption of technology is much more advanced than elsewhere in the world, including the US and the doctors have been great at helping us to bring this forward.

Whenever we visit a hospital we always find there is at least one really innovative doctor. We find he’s normally right at the top of his game and has been looking for a solution to this problem for many years. The normal reaction we receive is “where have you been all this time”? They’ve wanted to resolve this problem, but until now have always been frustrated in doing so.

If the government uses social enterprise to unlock this innovation from within public services then it will be successful. The danger comes if they decide to view it simply as a money saving exercise.

What are your main challenges going forward?

We are in a Catch 22 situation. The benefits of our system can increase greatly if they can be shared by everyone at the same time. The problem is how do they all do this together? I try to make sure we advance everyone in small steps at the same time. For example, in the early stages we concentrated on signing up as many hospitals and clinicians as possible before promoting it to the wider public. I didn’t want patients hearing about the service when only a few doctors were able to offer it.

Now as we have signed up sufficient numbers these serve as an example to others. If a patient finds that his or her hospital does not offer the system they can point to one that does. My goal is to have a million people trust us with their medical records.

Currently our numbers rank at a few thousand (I do not know the precise number as the information is encrypted). However, we’re seeing an acceleration of growth. I was in conversation recently with seven chief information officers (CIOs) at the same time which could add hundreds of thousands of new users. It is very viral. Those who already use the system are teaching others. It’s important that we achieve this accelerated growth if we are to stand against competition from profit seeking companies.


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