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Spread the word

The idea that eLearning can only be used in straightforward applications such as workplace health and safety training is now a thing of the past as health professionals grasp the medium as a way to communicate about more complicated issues, reports Richard Mackillican

Technology has revolutionised the way in which people communicate with each other. Whether it involves transmitting a breaking new story around the world or just a ‘tweet’ sent between friends, technology has made it quicker and easier than ever before to exchange information.

It is therefore easy to see why eLearning has become a popular way to increase staff skills throughout the NHS, given its convenience and the environmental benefits of bringing learning to the individual.

Initially, many applications of eLearning centred around quite subject matters such as basic health and safety training but as time has progressed, so has the way it is used.

Now, a group of concerned clinicians is using an eLearning programme to raise awareness of HAE or hereditary angio-oedema, a debilitating and potentially deadly condition with which many patients and doctors are unfamiliar.

Patients with the condition have a defect in a protein in their blood which controls swelling. This means that intermittently, some part or another of their body will swell up. This means that they are either disfigured, disabled or, if it is an internal swelling, the patient will be in considerable pain.

“It can also have a terrible effect on the sufferer’s personal life, especially with regards to having a stable job and a family, because the patient can be at the mercy of their condition,” says Dr Hilary Longhurst, consultant immunologist at Barts and The London NHS Trust.

Along with being a potentially extremely painful condition (it is as severe as a heart attack and child birth) and economic burden, HAE can also be deadly.

“There is a thirty per cent chance of mortality over the lifetime of the patient. Even though the chance of dying because of any individual swelling is tiny, there is a risk that if the swelling occurs in the face or the throat that the patient will asphyxiate.”

All of these factors, coupled with the fact that not that many people – let alone doctors – are aware of the condition drove Dr Longhurst and her colleagues to begin working on a programme to raise awareness of HAE.

“I have a special interest in this condition and a huge cohort of patients who suffer from it and I’ve felt for a long time that they do need active specialist treatment because we know that when we treat the swelling acutely, it will not progress. Therefore, I feel that there is a real need to educate doctors who are not aware of the condition because when a patient initially presents with symptoms, they will not appear to be suffering severely.

“Doctors will often wait until the symptoms have become more severe until they actually begin to treat the patient. This means that the patient will have already lost a day or two off work, be in pain or, at the very worst, be at risk of asphyxiating. So I’ve been very keen on educating clinicians on this matter.”

The actual eLearning programme itself has been created by one of the companies which manufacture treatments for HAE.

“We have been very lucky because a number of compounds have recently been licensed to treat this condition. This meant that there was an opportunity to get some sponsorship for an educational programme around HAE. The eLearning programme was simply one of the ways in which we wanted to make people more aware.”

The eLearning programme means that any time a patient presents signs of HAE to Dr Longhurst or one of her colleagues, they or the patient can inform that patient’s GP about the eLearning programme. The GP can then learn more about how to treat their patient’s condition.

Because Dr Longhurst has been involved in the process right from the beginning, it has given her the chance to influence the content of the programme.

“I have always been very keen to ensure that the companies involved in the treatment of HAE should also promote education about the condition. They agreed to this and so we had some meetings around what I’d like to see included, such as sections about pathogenesis, treatment and the practical aspects of the condition, along with some case histories.

“Our objectives are to increase knowledge about HAE itself and also what is needed to enable affected people to lead as normal lives as possible.”

So why use eLearning?

“Well, ideally it could all be done by word of mouth but I am just one person with a very busy job so it is crucial that information is spread in as many ways as possible with eLearning being one of those ways.

“It is also a great way to get information across to people which they can then access at their convenience and as I was involved throughout the production process, I feel that the programme itself really manages to express where we are at with regards to HAE at the moment.”

When producing any type of educational programme there will be challenges and in view of the complex subject matter, those challenges are amplified to some extent.

“There was a lot of work involved in putting this programme together and I think that one of the hardest things was narrowing down which information should be included. That being said, the medical writers who helped me put all of this information together were absolutely phenomenal. I could not believe that the writer had no idea what HAE was before he began writing about it for me. I was exceptionally lucky to have been given such great support.

“Getting physicians from other specialities – who had a working knowledge of HAE – involved in the programme was difficult. This was because, although we could find the odd clinician who had treated the condition before, on the whole it was very difficult to find anyone with enough experience of the condition.

“This is because even dermatologists – who you would have expected to have seen cases like these – may only look after one or two patients with HAE and many gastroenterologists might never have knowingly seen a case. Fortunately we were able to secure the services of Drs Clive Grattan, Siobhan Burns and Caroline Hawe, who do have a lot of experience with HAE and were able to help with dermatology, paediatrics and anaesthetic issues.

“Another issue is that there isn’t really much written about HAE in medical literature and little evidence for the standard treatments, although that is slowly improving. What I am hoping all of this work will do, along with raising awareness through patient groups, is to encourage more patients to come forward so that we can help more people to live with their condition by giving them effective treatment.”

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