Patient centricity refers to the process of designing a clinical trial, product or service around patients’ needs. Guy Yeoman, lead author of a 2017 paper on the topic, defined it as:
“Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family.”
Here, we explore the impact of a patient-centric approach and outline five ways to improve the experience of clinical trial participation for patients.
Why Is Patient Centricity Important In Clinical Trials?
When it comes to the design of clinical trials, the product being tested — or the company testing it — has historically taken centre stage. But when product-centric trials neglect patient needs, dropout rates are high and the integrity of the data becomes compromised.
As well as improving the overall experience of clinical trial participation, taking a patient-centric approach to study design leads to higher patient recruitment and retention rates, delivering better outcomes for clinical trials and getting life-changing products to market faster and within budget. But creating a truly patient-centric clinical trial requires a shift in focus.
Rather than considering only the what (product, processes, logistics, data, results) patient-centric trials focus on the how. They ask, first and foremost, how could this study be conducted to improve patient experience?
How to improve patient centricity
By carefully considering the how, we help create clinical trial processes for our clients that attend to patient needs at every stage of their journey.
Based on our learnings, here are five key areas to focus on to make your clinical trials more patient-centric.
1. Make information accessible
Patient centricity starts with developing accessible information, services and support that meet the informational needs of patients.
Using accessible language and creating need-based content makes your participants feel understood and supported. What’s more, they will understand the study and its implications more thoroughly too. As a result, they become invested in the trial and its goal — making them less likely to drop out.
Accessible language is language that is relatable, easy to understand, accurate, fair and empathetic. Examples include using active language and avoiding the passive voice, and always defining words that participants may not already know.
Patient-first content helps improve clinical trial retention rates by increasing engagement, allaying concerns and building trust. For example, we use colourful brochures and simple explanations in the patient’s native language.
We also test our printed and digital content with users from different backgrounds and with different levels of education to ensure it is fully accessible.
2. Involve patient associations
Involving patient associations and their members in the design of your clinical trial helps embed a patient-centric approach before the trial even begins. They will be able to offer plenty of insight into the lived experience of their members and can also support you to facilitate gathering feedback throughout and after the trial.
Patient engagement and empowerment increases retention. What’s more, the insights you gain from patient input will help you improve future trials. We work closely with a number of patient associations and patient groups. Organisations we meet with regularly include:
- Findacure
- AMRC
- PPMD (Duchenne)
- Eurodis
- Eupati
- ACRP
- OIFE (Osteogenesis Imperfecta)
- AT UK
3. Ensure patients feel valued
Ensuring your participating patients feel their input and concerns are valued has a huge impact on patient engagement and retention.
Throughout the clinical trial journey, we offer patients ongoing support through their preferred communication channel, whether that’s phone, email, smartphone app or post. We keep in regular contact with trial participants, offering follow-ups after each visit to make sure any issues are resolved before the next appointment.
Making sure patients feel valued creates a genuine relationship with them, and means they’re less likely to drop out of the trial because they trust that their concerns will be listened to, considered and resolved wherever possible.
4. Reduce inconvenience wherever possible
When it comes to logistics, a lot of clinical trials are not designed with participants’ needs in mind. Participants are often inconvenienced by needing to travel long distances for site visits, or end up out of pocket due to incurring expenses which causes frustration. Left unchecked and allowed to accumulate, these frustrations will likely lead to drop-outs.
To counter this, considering how clinical trial requirements will affect participants is important. Something as simple as creating a swift, easy-to-follow process for reimbursing expenses could end up being vital to a trial’s success. Paying attention to these details increases patient sentiment and therefore willingness to continue.
We’re always looking for new ways to reduce inconvenience for patients at every stage of the clinical journey. For example, we use mobile app technology to facilitate rapid reimbursement of expenses — ensuring that participating in trials doesn’t have a financial impact on patients.
In future, we’re committed to making clinical trial participation even more convenient through virtual reality, home nursing visits, wearable technology, and continued app development.
5. Empower patients through technology
Recent advancements in technology have introduced multiple ways to empower patients participating in clinical trials.
First of all, the wealth of information out there means patients can find a huge amount of information online, and network with members of patient advocacy groups in order to become more aware of the trials and pharmaceutical solutions available to them. Today, patients are better informed about their own conditions and what’s available to them than previous generations.
What’s more, as digital experiences dominate more and more of our day-to-day lives, there are huge opportunities for clinical trial participation to be facilitated through the use of wearable technology, virtual communication, digital trackers, and more. All of which can immediately feed-back real-time, real-life data to study organisers while empowering patients to feel like they’re in control.
As this technology advances and becomes more commonplace, the expectations of clinical trial participants will shift. And the most successful studies will be those that adapt to meet them.
