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Be Patient

Awareness raising is key to boosting patient involvement and engendering trust.

Recently we witnessed National Patient Participation Week. Organised by the National Association for Patient Participation (NAPP) it was an awareness raising week designed to encourage patient engagement – with a wider focus on general practice.

Awareness raising weeks or days are commonplace in the health sector and have multiple roles – from increasing more general understanding of medical conditions to supporting sufferers. It can also boost diagnosis in the population at large, help raise funds for research and ensure patients feel represented.

These types of events can be valuable for improving communications around disease, treatments and research. As NAPP says, “ultimately patient engagement improves awareness and education of health-related issues in the community, alleviates pressure on the system and increases quality of care”. Across healthcare there are areas where better education and understanding from the patients’ perspective is needed to help keep improving outcomes.

But they should also be approached with a degree of caution. The devil is in the detail – so while on the surface the awareness raising element is clearly a great idea, the way it is executed really matters.

BEWARE OF BIAS

We need to be mindful that sometimes the focus can fall too much on what’s not working, as opposed to what is working. An overemphasis goes on the negative aspects because that’s what needs correcting.

For instance, in patient groups there is often a disproportionate number of people who have been wronged, rather than righted. People tend to get active in these groups because of problems they’ve encountered which can lead to selection bias and quite negative echo chambers. Then too much emphasis can be placed on correcting things that have only gone wrong for a few people. So, for any highly focused activity like this, we must always be mindful of the sample bias that may be occurring.

With that caveat, these awareness raising moments can offer much needed PR and help get patients involved and working together. Indeed, they can be vital in off-setting cognitive biases that we can’t overcome without genuine input from others.

Empathising with accuracy is difficult and when awareness is raised like this, it can encourage patients to come forward, who would not normally be motivated to discuss these topics.

CULTURE CLUB

HCPs need to overcome the curse of knowledge – the psychological idea that we can’t put ourselves in the position of someone we don’t know. Beyond their early years training, HCPs get to know their patients by being surrounded and submerged in their conditions. They need the exposure to assimilate the thoughts, opinions and backgrounds – the patient culture – specially to help traverse the socio-economic divide that often exists between most of the HCPs and most of the population.

Communication is multifaceted. From the HCP perspective it’s not just about hearing from patients and patient groups, it’s about instilling the belief that you have their best interests at heart and creating a positive sentiment. Awareness events can be part of that process.

A challenge HCPs are currently facing in the NHS is reduced appointment times. To empathise with your patients, you have to understand them, and to understand them you have to know about them, and to know about them you have to talk to them.

If that time is reduced, it is harder for HCPs to put themselves in their patients’ shoes.  There is less time to know their background and to reach those breakthrough moments when understanding improves and insight is reached over and above face value. You really need to know someone before you can communicate effectively with them.

There are certain areas where this is more of an issue than others – one being rare diseases. For while a diabetes sufferer, for instance, is highly likely to meet other people with diabetes and share their experience, for those suffering from a rare disease finding other people going through it, is far less likely.

Often the only time those patients can feel like they’re sharing their experience is when the talk to their HCP. The internet and Facebook groups have changed the dynamic slightly, because the opportunity to find those rare other people with the disease has increased. But from an HCP point of view, the challenge of understanding patients with a rare condition – where you may only encounter a few – is much larger.

PIVOTAL PARTICIPATION

When it comes to clinical trials, improving participation once again requires a double-headed approach of communication and patient involvement. But the burden of communicating the need for volunteers to take part in clinical trials – along with the way they work – should not just fall to HCPs.

Indeed, as everyone is increasingly behind the democratisation of healthcare, which has seen an early school syllabus for healthy eating and diet among other things, is it time for clinical trial literacy to be introduced as part of children’s education?


‘HCPs need to overcome the curse of knowledge – the psychological idea that we can’t put ourselves in the position of someone we don’t know’


As communicators, we’re working very hard to make the realities of clinical trials and the opportunities that clinical trials present accessible. But that’s only half of it – imagine how powerful it would be if people were educated about clinical trials in a more wholesale way. Then the onus for better participation wouldn’t just be on how we improve accessibility of information and understanding of the benefits.

If we accept that healthcare is a positive opportunity for people, and that it is underpinned by communication, all the burden would never be left to the communicator. And we don’t – that’s why we need public health campaigns, and we try and educate people in school around these topics. It’s time for that to be broadened to clinical trials.

MIRROR TO OURSELVES

We are always looking at ourselves – this is how the patient is, how do we improve – instead of how we educate better. Awareness campaigns could be just the right opportunity to push for this aspect of healthcare communication and improve patient uptake of clinical trials.

So much around clinical trial recruitment centres on trust. The better the information shared – and from sources free from bias – the more likely it is that people with view this aspect of healthcare and drug development as safe, worthwhile and essential.

Communications for clinical trial recruitment stretch across platforms now – from HCPs in hospitals to patient advocacy groups, from social media communities to dedicated databases of ‘opted-in’ patients.

Trust is paramount because clinical trials are often for not-yet-proven treatments, but for some people taking part in a trial, it is their only option to access treatment not possible elsewhere. So, while all communication must be fair and balanced, increasing awareness may be needed to ensure these people know that this is a possibility. Communications must build confidence in clinical trial participation by demonstrating that there are safety mechanisms and protocols in place.

27th July 2022

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