The 4 ‘E’s of patient engagement

As the world looks to clinical research for a solution to the global pandemic, it’s so easy for researchers to get caught up in the romance of humanity-saving cures and Nobel prizes. What is particularly difficult is finding a balance between these dreams and reality. With 86% of clinical trials, right now, failing to meet patient recruitment targets, there is a disconnect between the two concepts that only a complete reevaluation of current recruitment and retention strategies can remedy.

Our ultimate blueprint to patient recruitment tackles the four underlying principles of successful patient engagement today. This step-by-step guide is guaranteed to help researchers of any level of expertise clearly understand the core elements of patient-centricity and how to effectively build and sustain the patient-researcher relationship. So, today, we take a look at the four ‘E’s of patient engagement and what they mean for recruitment officers looking to start-up or restart their clinical studies in our changed, post-COVID world.

Explore

It all begins with your research - and we don’t just mean your study. When we talk about exploring, we aren’t just referring to scientific discovery; exploring is also about going out of your way to research and discover the needs of your patients (they are the ones on the other end of your study after all). Ask yourself the following questions:

1. What is your work going to contribute to your field of science and the world?

2. Who is this research going to benefit specifically? / What part of the population will benefit most from your study?

Your answer to the first of these should consist of a fairly in-depth analysis of your area of study; everything from a general overview of your field (what has come before you / what clinical research is currently underway) right down to the molecular structure of the compound/condition/disease you are interested in handling. This seems pretty straightforward, but you will be surprised how many researchers don’t accurately describe their own project! In fact, a study by Offredy and Vickers estimates that more than half of healthcare research proposals get rejected due to reasons concerning a lack of significance, a flaw in methodology, a lack of clear hypothesis and a disregard of research ethics.

For the second, your answer should confront two main factors: age and sex. These are, after all, the factors that commonly influence how a certain individual copes with a substance/condition/disease. After having identified a target patient group, which should be the case for most conditions, research sites must do some background exploration into the lifestyles of this particular group. Remember: clinical research isn’t just about working in a lab with data all day - it’s a fascinating part of it, but it’s not the be-all and end-all. At its fundamental core, medical research is about one human being helping improve the life of another - so we must remember the humanity at the heart of it all.

(If, however, your research is on a condition that does not primarily (the keyword here) concern itself with a certain age group or gender then it’s important to keep in mind the universality of your cause moving forward).

Go the extra mile, do the research and work out a general profile for your potential patients. Look to national consensuses and wider social surveys for general trends, with the following questions in mind:

• What are their priorities in employment, family life, leisure etc.?

• What forms of communication do they use regularly?

• What are the lifestyle choices that inform their opinions?

This second task may not be your area of expertise; that is why we recommend that your project have some form of market research sub-group as part of your initial feasibility planning (check out our advice on this particular topic here). For some, this step will sound like a basic overview of marketing strategy (and it is) - but, for many, this is a key element to research that appears to be hidden in plain sight.

Explain

So, now you understand the value of your research and who you are doing it for, it’s vital that you make sure others can too. Clear and concise communication is actually less common in the clinical research industry than you think - unfortunately, the issue doesn’t begin and end with doctors’ handwriting. According to a recent report published on the US National Library of Medicine website, 75% of the orthopedic surgeons surveyed believed that they communicated satisfactorily with their patients, yet only 21% of the patients reported satisfactory communication with their doctors. It’s time for researchers to brush up on their social skills, and the key to mastering communication in clinical trials primarily comes down to adopting a patient-first approach.

Regardless of ambition or drive, research sites must ensure that patients are always at the forefront of their vision, especially when in conversation with potential candidates. A patient-first approach not only emphasizes the humanity of any clinical trial but is also proven to improve patient engagement and retention rates. High-quality relationships are characterized by communication in which researchers minimize the power distance between themselves and their patients; hence, our emphasis on understanding your patients’ everyday wants and needs. It’s all about showing your enthusiasm to engage with the patient in any way you can. Show them that you are interested in them as a person - they are not lab rats after all!

Don’t just take our word for it; take the advice of Dr George Findlay of the NHS Foundation Trust. The doctor outlines, in an interview with The Health Foundation, the communication-centred, patient-first approach he implemented to increase patient satisfaction and to improve productivity in crisis management. Findlay summarizes the method in two core principles:

"How can I fix it?"

A focus on the solution, not the problem, is paramount to effective communication. Unfortunately, it is common in the workplace for people to shift blame or difficulty onto someone or something else. So, being proactive and optimistic in your conduct proves to candidates that you mean business. Top tip: to champion your problem-solving skills, make sure your FAQ and feedback forums on your project website are updated regularly.

"The little things matter.”

Running a successful operation is not all about big, fancy initiatives. When issues arise, focus on them individually and make personalized solutions. Too much emphasis on a “wider picture” outlook in crisis management can easily turn helpful terminology, such as ‘patient-first’ or ‘patient retention’, into corporate jargon.

Another crucial element of clear communication is in the language you choose - not only are you looking for words that play to your patients’ interests, but you should also avoid phrases that are perhaps unconsciously misleading or unnecessary.

Pain, rupture, locked and frozen. Discomfort, tear, stiff and worn. Which of these sets of words would you want your doctor to use when describing your illnesses? I think it’s safe to say: we would all prefer the latter.

”Anxiety weighs down the heart, but a kind word cheers it up.” There is a lot of truth in this simple proverb. A recent study by HAND found that words can shape or reinforce a patient’s coping strategies. Pain isn’t just physical, it’s also mental: psychological distress has been proven to be an important predictor of pain intensity and disability in patients. So, to attract and retain candidates for any clinical trial, research sites must think positively where they can.

A patient-first approach exemplifies care through meticulous word choice across all forms of communication. Positive communication is defined by several factors: positive intentionality, initiative, adaptation, empathetic listening, and the offering of social support. Whether it's on an informative leaflet or during a consultation with the candidate, the researcher's language must always be empathetic to the individual. Remember: while actions speak louder than words, it still matters what you say.

Elevate

Now you have strengthened the foundations of your structure - you know your aims and vision, and you’ve mastered the art of communication - the next step is to consider how you are going to elevate your image. How are you going to raise awareness of your trial to begin with? While a lot of the answers are going to come from knowing your audience (again, hence the importance of researching your potential patients), there are some basic elements in appealing to candidates that seem to work consistently.

We have several articles in our archives packed full of resources for marketing your trial to potential patients. Check out those listed below:

• Marketing a trial while tackling the stigma of clinical research

• ‘Why should I care?’: appealing to the individual

• The importance of trial recruitment companies in gaining patient trust

In addition to that outlined in these pieces, there does seem to be a pattern in the messages that successful trials send to their audience. Elevating your image comes down to promoting a number of key values, and these three core concepts, first noted in Routledge’s ‘Handbook of the Philosophy of Well-Being’, are summarized neatly for you here:

Well-being

Make sure patients feel content and safe, with a sense of self-worth and purpose. Suffering pain, distress, fear, loneliness, and humiliation can all detract from the quality of one’s life. Successful projects must focus on inclusion and social engagement. An ideal study enables the patient to continue their interests, and include mentoring that allows research participation to have practical benefits.

Autonomy and independence

Over the last fifty years, there has been a lot of positive change concerning individual autonomy and decision-making. The progressive view upheld by successful trials is this: patients must retain their own sense of self, and must not be defined by their illness. The stigma surrounding illness needs to be challenged by medical specialists. Never talk about the patient as if they’re not in the room - even if their mental state is deteriorated and you’re speaking with a caregiver, always keep their dignity and humanity in mind.

Equality

Despite all the differences between people – in their cognitive or physical capacities, in their ethnicity, religion, gender or sexual orientation, in their age or level of wealth and so on – it’s important to remember that we are all of equal worth. It is widely recognized that people who are routinely treated with disrespect, as inferiors, have a reduced quality of life. Organisations who know how to successfully elevate their trial fight proudly against discrimination in all areas of their study; meaning that any results produced feel inclusive and should, in theory, work for all.

Evolve

Now, this one might be a bit of a stretch in terms of the label-to-topic connection, but as many in the field of human evolution now recogni