When it comes to the medical treatment of heart failure patients, it's the clinicians — such as heart failure specialists, like consultant cardiologists, heart failure nurses and GPs — who know best. However, “it is the individual heart failure patients who know their condition, says Nick Hartshorne-Evans, – “they can tell you what having the condition is really like”, which is why it's so important that their voices are heard and listened to by bodies such as the NHS, NICE, the new Sustainability and Transformation Partnerships (STPs), Clinical Commissioning Groups (CCGs) and Academia.

 

Using patient insight

 

Hartshorne-Evans — a heart failure patient himself — is the CEO and founder of the Pumping Marvellous Foundation, a UK, patient-led heart failure charity. Hartshorne-Evans also sits on the NICE Chronic Heart Failure Guidelines Committee. “The patient has a unique perspective,” he says. “They are driven by need and unconcerned with cost. They add real value to the conversation around heart failure because they have insights about the patient experience and solutions to discuss. The knowledge within the patient population is generally untapped. Bear in mind that the heart failure patient population is huge: roughly 900,000 people are affected by the condition. That's a massive bank of knowledge from individuals from all walks of life that can be a powerful resource for the NHS.”

For example, Hartshorne-Evans, recently polled the online heart failure patient community to ask how they would like to receive information about their condition: digitally or in print? (Print is still favourite but online they could explore their condition further). Other patient insights might include concerns about medication, worries about life expectancy, employment concerns and general day-to-day living; life with heart failure is very uncertain.

How individuals felt when they were given their diagnosis by their healthcare professional is a very prominent concern. How would you feel having been told: ‘You have Heart Failure’? “We've asked patients about their reactions to this news, because a medical professional's tone at diagnosis is so important,” says Hartshorne-Evans. “It's useful to hear from those who've experienced it, and to understand what they feel that tone should be. Some may want to be told ‘how it is’, others require a different, more rounded approach.” Doctors need to decipher how to tailor their communications style. If this kind of insight is taken on board by doctors, it will ultimately help other patients.

 

Patients should talk to each other

 

It can also help if patients talk to each other. Social media platforms have an advantage over face-to-face meetings because, in moderated, well-managed, closed community groups, people can dip in and out of conversations. They can find answers when they need to get instant feedback, rather than having to wait for an appointment. “In one group we run, someone commented: “I've been a member of this group for two years, haven't posted anything but watched and learnt how to manage my heart failure. But I now have a question. Can anyone help?” This individual had been reading about other people's heart failure experiences without active interaction, but when they had an issue themselves they felt able to speak up about it. That demonstrates the power of peer led online forums.”

 

How patients can use social media

 

These days, many people are looking to manage their health differently, says Hartshorne-Evans. Technology enables patients to access information very quickly. Many want as much information at their fingertips as quickly possible about their condition before they see their healthcare professional. They like asking questions on social media platforms because peer to peer feedback can help them make informed decisions. “They might say: 'I'm going to see my cardiologist tomorrow. What kind of questions should I ask?' Well-managed on-line communities are also beneficial from a clinician's point of view, because patients will be equipped with more knowledge about the choices they are able to make. They'll then begin to develop a mutually beneficial doctor-patient relationship, which is very important when you are managing a chronic condition like heart failure. Ultimately, this will lead to better outcomes for the patient.”

 

More knowledge reduces cost

 

There's another advantage from the clinicians' side: figures from the British Heart Foundation published in 2015, show that heart failure accounts for two per cent of the total NHS budget, with 70 per cent of these costs due to hospitalisation. A typical cost per hospital admission episode for heart failure amounts to £3,796, while five per cent of all emergency admissions are due to the condition.

Yet, if a patient can self-manage their condition more effectively by using the peer-to-peer network, they may not have to make unnecessary trips to A&E or hospital, says Hartshorne-Evans. “You can have a better quality of life with heart failure if you know how to self-manage and you know when and where to interact with the NHS. Greater knowledge can help you feel more in control, however, this is not a replacement for well-managed clinical care, but it compliments it well.”