Embedding Patients in the Research Team can Help Attract and Retain Trial Participants

I’ve previously suggested that patients and people from research sites should be involved in the design of trial protocols. Another useful element I’ve discussed recently with patient representatives is having patients embedded in the research team.

As well as obviously building a sense of togetherness and empathy, having patients involved in the operation of the trial can help with both recruitment and retention.

For instance, potential trial participants may be more likely to listen to someone they know has had similar experiences to their own, which can help encourage them to investigate taking part.

There can also be the motivation of ‘not letting their own tribe down’ which can keep people committed to staying on the trial.

And including patients can be beneficial for building up additional trust between trial participants and researchers, as well as having someone within the team that researchers can turn to in order to sense-check what they have planned.

Better User Experiences can be Generated by Getting Relevant Users to Test Before Launch

Anyone who’s used the website clinicaltrials.gov will be aware that perhaps user experience was not a priority when it was being developed.

Certainly there are complexities involved in having such a vast database of information – not least of which providing adequate search functionality.

I’m assuming that some kind of AI capability will ultimately be brought in to make things easier – in the same way that Bing and Google – websites with a far larger database of information to sort through – are doing.

But one thing that should probably have been done better in the first place is to bring in multiple users to test the user experience, provide feedback and suggest improvements, before it was launched to the public. Same as how for clinical trials, the users would be people from research sites and patients, who should be able to test the user experience before it is forced upon them.

Patient Engagement and Patient Recruitment are Different but Connected

Patient engagement is often used as a synonym for patient recruitment. But actually they are two distinct – though connected – concepts.

Recruitment is focused on attracting people to take part in a specific clinical trial – or potentially build a database of people who might be interested in trial participation.

Whereas patient engagement is a more long-term process, based fundamentally on involving patients in their own healthcare journey.

Certainly, engaging with patients – especially as a firm that might sponsor trials – is a benefit for being able to recruit trial volunteers. And I would suggest it can make a very significant contribution to a recruitment strategy. Having a trusted relationship with a patient can give you a head start when it comes to encouraging them to take part in a trial.

But engagement is about far more than that, and really represents a process of collaboration between patients and healthcare providers that should lead to better outcomes all round.

It can be Worth Allowing your Unconscious Mind to Come up with Solutions to Problems

While writing my next book recently, I was stuck on a particular element and couldn’t find a solution for driving the narrative forward using the free writing or mind mapping techniques I’ve mentioned before.

Then one day, somewhat ‘out of the blue’, I woke up with the solution almost fully-formed in my head, so made sure I wrote it down so I wouldn’t forget it.

This is an example of what happens in the unconscious when you’re wrestling with an issue.

It’s the third stage in the famous James Webb Young technique for producing ideas, or what Stephen King calls ‘the boys in the basement’ – who work on ideas while he’s not directly thinking about them, then deliver the solution ‘out of nowhere’.

John Cleese, in his book ‘creativity’, also shows how the unconscious mind can ‘do its thing’ overnight once you come up against a problem your conscious mind can’t solve.

Benefits of Translating Patient Recruitment Materials for English-speaking Countries

Translating patient recruitment materials into languages other than English is something organizations will consider when recruiting patients in countries where English is not the main language – most of Europe, South America, Asia etc.

And certainly that will help with awareness of the trial in those countries.

But I think there’s also an opportunity to utilize non-English language materials even in countries such as the UK and US, where English is the main language.

For instance, there are over 200 different languages spoken by people in New York alone – with some estimates suggesting this figure is actually over 800!

Here in the UK there are a large number of people who have English as their second language.

So these facts would seem to indicate that you should be able to reach a wider audience – even within the existing locations you’re targeting – by adopting a multi-language approach for your patient recruitment materials.

Some Things we can do to Retain Patients on Trials include Appointment Reminders

Keeping in touch with trial participants isn’t just about seeing them at their regular site visits. It’s important, of course, to treat each person with respect and make them feel welcome when they do attend the site. And incorporating such elements as remembering their birthdays, or where they went on holiday, can help cement a relationship with them.

On top of this, offering such things as ‘patient appreciation items’ can help with patients viewing you and the trial in a favorable light – like the free pens, mousemats, mugs etc. that corporations often supply to their customers.

And one of the simplest methods of ensuring patients remain committed to attending their site visits is to remind them when they are coming up. This could be via a trial-specific app, text message, email, phone call, or even via a posted letter – as often happens in the UK as a reminder of an upcoming hospital appointment.

Uncontactable Trial Applicants are a Big Bottleneck for Patient Recruitment

One of the biggest factors affecting rates of patient recruitment for clinical trials is the number of people who initially apply that can’t then be contacted in order to get them to go through an initial screening process.

In order to mitigate against this issue, we can implement different strategies to ensure as many of the initial applicants are contacted as possible.

For example, sending an immediate response via the patient’s chosen method, such as text or email. Or having them download an app, or communicate with a chatbot if they’ve applied online. Or have someone follow up with a swift phone call – the nearer to the time of the application being submitted the better.

The key factor is to be able to provide a range of options that suit their circumstances – enabling us to contact them in a timely manner and not have them simply become another person who is ‘uncontactable’.

Testing Patient-Centric Ads Against Condition-Specific Ads can Lead to Continuous Improvements

Using digital ads is a widely-used element of many successful patient recruitment campaigns. And there’s been a move in recent years towards making the content of these ads more patient-centric, rather than simply focusing on a therapy area or condition.

Ads that do focus on a therapy area often use a phrase such as ‘we are looking for people with xyz condition’. That type of standard phrasing came about due to the restrictions placed on what could be said within an ad, primarily by Facebook – which would reject ads that strayed too far from this on-the-nose style of content for health-related ads.

As a patient recruitment specialist, I’m all in favor of having patient-centric messaging. But with a digital marketing hat on, I can see the on-the-nose ads still working well for attracting trial participants.

My recommendation, then, is to test both styles of ad against each other in a process of continuous improvement.

We Should be Working Towards Offering Patients a Choice of When and How to Participate in Trials

There’s a well-known saying that too much choice can be a bad thing. Such as when you go to a grocery store and have to decide between 15 types of canned tomatoes, or when a restaurant menu offers 80 different main courses.

Within the world of clinical trials, however, we should be working on ways to offer patients more choice regarding when and how they take part.

The fundamental premise of Decentralized Trials is to try and provide different options that fit best into a person’s lifestyle. A lot of the focus on DCTs is about the tech, but really it’s about innovative processes that can enable trial participation without the requirement to attend a research site.

Certainly that model of research sites being the focal point for trial operations isn’t going away. But augmenting it with additional options that provide patients with more choice, is surely the direction we want to be heading.

Mind Maps are Another Useful Tool for Clarifying Thinking and Producing Ideas

Continuing on from the suggestions for no filter brainstorming and free writing, I find a valuable tool for generating ideas and coming up with solutions is to create a mind map.

This involves having a central thought or idea, then adding to it with all the other thoughts that occur that are related.

Different branches of the mind map then also inspire different thoughts and ideas of their own, which, in turn, lead to additional branches, thoughts and ideas.

As with the brainstorm and free writing processes, creating a mind map can help formulate new ways of looking at an issue that I may not have considered otherwise.

It’s also possible to view this mind map creation process as being the equivalent of my having a dialogue with my own internal ChatGPT – the different branches providing relevant prompts that generate the types of responses I might not have come up with otherwise.