Often in this industry, we put a lot of emphasis and attention on patient recruitment — how can we get all the people that we need to take part, and how quickly? But this means that we can fall into the trap of almost forgetting about people once they sign up. This must change.
18% of all patients that get as far as randomisation end up dropping out, meaning that 18% of the study population will need to be recruited for twice. This costs both time and money, and can lead to a significant loss of valuable data. So, how can we combat this?
Read on, to discover our 5 tips on strategic patient retention.
- Incorporate reimbursement into your budget
To keep participants on your study, you need to make it possible for them to. Nearly all clinical research studies require a certain financial commitment, and a time commitment. Time commitments can also have a financial impact — if someone is having to take time off work to attend appointments, is this money coming out of their pay cheque? Although some participants may be able to absorb the loss of pay, and any extra money they’re spending on travel or food, many won’t. Socioeconomic status can also be impacted by race and ethnicity — in the UK, minoritized ethnic families are 2–3 times more likely to be in persistent poverty than White families2 — making it even more crucial to make reimbursement a priority.
If your trial is in the US, consider the impacts of the cost of care for health conditions, and if there’s any reimbursement opportunities for this — or any way to include this for free as part of the study. Black Americans are 3.7% more likely to be uninsured than White Americans, and 19% of Hispanic Americans are uninsured,3 so this could be integral to recruiting and retaining a diverse range of participants. - Make your clinical research study as flexible as possible
As well as prioritising reimbursement, consider ways to make your study more flexible, and therefore easier on participants. Offering home health visits may reduce the financial and time burden on participants, and for patients whose condition makes them less mobile, this could be the difference between being able to take part or not.
If study appointments must be in-person, ensuring that appointments are punctual and efficient shows that you value participants’ time, and reduces the time burden on them. Reimbursement for any travel expenses incurred to attend the appointment may also enable more participants to continue taking part. The area that participants have to wait in is also a key consideration — do they have to sit in a general waiting area, or could there be a private room? If they’re going to be sat for a long time, is their free WIFI, or other entertainment material? Are the chairs comfortable? Although these may feel like superficial considerations, they go a long way to making participants feel valued, and could impact their willingness to continue taking part in the study. - Perfect the art of ‘retention items’
Sometimes, a simple ‘thank you’ can go a long way in patient retention (read our blog post on that here!). One way to express your gratitude is to send ‘thank you’ notes at different points of the study, either electronically or in physical form. One suggestion is milestone recognition cards, but you can do whatever works for you. Also consider sending more personalised items, such as birthday cards or cards for religious/cultural festivals. These materials help to make participants feel truly valued, and avoid the feeling of being a ‘number’ or ‘statistic’. - Enable participants to take control over their own health
Something we frequently hear from patients is a wish to be able to feel some control over their own health. Chronic health conditions can make people feel out of control, confused, and isolated — so what can you do to help combat that? One way to approach this is to create an app for participants. This could contain:
– A calendar that has all of their appointments on it
– Reminders about study activities, such as when to take the study drug
– Information about their disease or condition
– Information about the research study
– A symptom tracker, that they can use as a reminder when attending appointments
– A place to contact the study team
By putting all of this information in one place, it reduces the mental burden on patients, and by including information about their disease or condition, it enables them to take more informed control over their own health. Gone are the days when clinical research studies had a one-way benefit. The question at the forefront of our minds should be: How can we immediately improve the lives of the participants on this study? - Seek patient feedback at all stages of the study
You didn’t think we’d write a whole blog post without mentioning the importance of patient engagement, did you? Of course not. One of the most crucial ways of increasing retention on your clinical research study is by listening to the participants. And we don’t mean passively listening, a nod here, a ‘yep’ there, and then never thinking about it again. We mean actively listening, and properly taking any feedback on board. The participants are the people who know best what they need to help them to stay on the study, and if anything feels inaccessible.
As well as taking feedback from participants on the study, engaging patients in the study design process is also integral to creating a study that really works for patients. Consider getting feedback on your proposed study design, and ascertain if it contains anything that may hold people back from taking part, or prevent them from continuing on the study once they’d started. You can find out more about the power of patient co-creation in our blog post here.
Patient retention can sometimes feel like a complex task, but really it can be very simple. The underpinning message to all of this is the importance of expressing gratitude, and ensuring that participants feel truly valued for the sacrifices they’re making to take part in the study. Participants want to be treated as individuals, not numbers and statistics, so ensure that this happens — maybe this takes a mindset shift, and perhaps budgets may have to be upped, but in our opinion, it’s certainly worth it.
- Advarra. Retention in Clinical Trials: Keeping Patients on Protocols. 2021. Accessed at: https://www.advarra.com/resource-library/retention-in-clinical-trials-keeping-patients-on-protocols/
- Institution of Race Relations. BME statistics on poverty and deprivation. 2023. Accessed at: https://irr.org.uk/research/statistics/poverty/#:~:text=Furthermore%2C%20people%20in%20Black%20and,
than%20people%20in%20White%20families - KFF. Key Facts about the Uninsured Population. 2022. Accessed at: https://www.kff.org/uninsured/issue-brief/key-facts-about-the-uninsured-population/
