The Complete Guide to Improving Patient Retention in Clinical Trials

Research has shown that patient-focused trials recruit the required number of patients in almost half the time compared to all other trials. Despite this, only 44% of medical professionals said they believe their companies will adopt patient-centric trial practices in the future.

What’s more, the link between patient recruitment and retention isn’t to be underestimated. The typical clinical trial extends recruitment by 71%, costing sponsors millions. In part, this is due to patients leaving the trial early – and high patient dropout rates mean more than two-thirds of trials fail to meet their goal.

In this comprehensive guide to improving patient retention in clinical trials, we explore the impact of a high level of patient focus and support on recruitment and retention rates. We’ll also offer our expert insight into key ways to prioritise patients at every stage of the clinical journey.

Why Is Patient Retention Important?

The average cost of developing a drug is $2.6 billion, and it’s estimated that sponsors lose between $600,000 and $8 million for every day a trial is delayed.

While recent research shows the average time it takes to get a drug to market has decreased, the average success rate of clinical trials currently sits at around 14%.

Patient retention is a huge issue when it comes to clinical trial success, and some trial designers will even factor in a dropout rate as high as 30% when budgeting and planning for a trial.

Now more than ever, clinical research needs to focus on patient support to boost retention rates and ensure the overall success of a study. Participants must be treated as individuals, and organisations must step away from a one-size-fits-all approach which leaves patients feeling undervalued.

The world is changing, and with it, so are people’s expectations. Through social media communities and dedicated online forums, patients now have access to information and support at unprecedented rates. And they have a voice. Social media and Patient Advocacy Groups (PAGs) mean patients’ experience in a clinical trial can – and will – be heard.

Read More: The Role Of Social Media In Overcoming Big Pharma’s Trust Problem

While some patient drop-outs are unavoidable, others are easily preventable. A deeper understanding of individual patients’ situations can help researchers think about strategies to overcome the most likely challenges patients will face.

Why Do Patients Drop Out of Clinical Trials?

Patients have the right to discontinue their participation in a clinical trial at any time, for any reason. The most common issues patients cite for dropping out are:

• Conflicts in their schedule
• Travelling to specific locations is inconvenient
• They’re physically unable to travel to a site
• Financial constraints
• Feeling a lack of appreciation
• Forgetting their appointments
• Fear and anxiety
• Not fully understanding the expectations placed on them

These common issues can be grouped into four main areas:

1. Inconvenience and overwhelm

Throughout the clinical trial process, the number of site visits and assessments a patient is required to attend can feel at best inconvenient, and at worst overwhelming. Especially as a lot of appointments require extensive, and sometimes international travel.

On top of this, scheduling may conflict with their day-to-day lives and personal commitments, long site visits can be draining, and negotiating travel logistics and expenses can be stressful. If you combine all of these, it’s no wonder that so many patients make the choice to leave a trial early.

2. Lack of communication

Effective communication and documentation can become difficult and complex when patients are attending studies away from their home country, especially if language barriers also play a part.

What’s more, when patients feel unclear about their role in a study, confused by jargon, acronyms or protocol language, or anxious about what to expect at each stage of the clinical journey, they’re far more likely to drop out of the trial entirely.

3. Feeling underappreciated

Patients are integral to the success of your clinical trial, which means they not only need to feel valued and supported – they deserve it. If patients feel underappreciated or – even worse – mistreated, they’re not only highly likely to drop out of the trial, but they’re also likely to share their negative experience online via social media of patient forums. This can have a big impact on recruitment for future trials too.

4. Financial barriers

Travelling to and from study sites can understandably put a financial strain on patients and their families. As well as having to pay upfront for transportation, accommodation and additional expenses with a long wait-time for reimbursements, they may also lose money through having to take time off work.

Read More: Why Do Patients Drop Out Of Clinical Trials?

How Can We Improve Patient Retention In Clinical Trials?

After we understand the main reasons patients have for dropping out of clinical trials, we can start tackling the challenge of patient retention by asking the right questions, listening to patients’ needs, and anticipating problems before they occur.

With all this in mind, it’s not surprising that clinical trials are most successful when the protocol is designed from the perspective of the patient. There are a number of ways we can do this:

1. Involve patients and patient associations from the very beginning by working with patients and patient advocacy groups
2. Make patients feel listened to, valued, and supported throughout by listening to patient sentiment (and acting on it)
3. Support with logistics such as travel and expenses to reduce the level of inconvenience patients experience
4. Use accessible, easy-to-understand language to effectively communicate with patients at every stage
5. Empower patients and give them a sense of autonomy over their treatment plan by using digital technologies

Read more: Five Ways To Improve Patient Centricity In Clinical Trials

Let’s dig into each of these focus areas for improving patient retention in more detail:

1. Working With Patients And Patient Advocacy Groups

Patients are no longer passive recipients of their care. There are many initiatives to foster better patient involvement in and understanding of the design, planning and delivery of clinical trials.

Patient Advocacy Groups (PAGs) are on the rise, championing better support for patients at every stage of the clinical journey. This presents a key opportunity for sponsors to create better relationships with PAGs, really get into the world of their patients, and use this understanding to mitigate issues before they arise.

Read more: How Pharma Can Build Better Relationships With Patient Advocacy Groups

2. Listening To Patient Sentiment (And Acting On It)

Patient sentiment isn’t always easy to measure. Feelings don’t exist in isolated states, particularly when patients are dealing with complex health issues. Sometimes patients themselves are unclear about how they’re feeling, and this can change rapidly on any given day.

Using technology to gather data around patient sentiment allows us to effectively monitor sentiment shifts over time, which helps us act quickly to provide a solution to any issues they may be experiencing.

Monitoring and predicting patient sentiment can also identify where patients are likely to lose motivation to continue following agreed protocol, or where they might be confused, and allow your team to work more effectively with them to ensure adherence and prevent dropout.

Read More: Using Data to Predict Patient Sentiment in Clinical Trials

3. Reducing Inconvenience For Patients

From expense management and reimbursement to giving patients control over their travel and accommodation arrangements, there are many ways you can design a clinical trial experience that fits with the needs of patients.

Reducing as much of the inconvenience that comes with participating in a clinical trial as possible is key for high patient retention. Here are some areas to consider when planning your patient retention strategy:

1. Home Health services take the clinical trial to the patient by conducting visits in the home. This reduces the number of visits to study sites and significantly lessens the burden of time and money on patients and their families.
2. Translation services ensure you can communicate in a patient’s native language. This removes potential for confusion and overwhelm, and having dedicated support gives patients the opportunity to discuss issues and concerns easily.
3. Personalised travel services give patients control of their own travel. Some technology platforms for arranging travel and accommodation during clinical trials integrate with expense reimbursement apps or software, removing financial and administrative burden from patients and putting them in the driving seat.
4. Mobile technology such as bespoke apps can be used to track ongoing patient sentiment and alert sponsors, HCPs and caregivers of any issues before they cause the patient to drop out of the trial.

Discover our full range of patient support services.

4. Communicating With Patients Effectively

Clear, patient-focused communication is essential for patient retention and overall satisfaction during a clinical trial. To effectively put patients first throughout the whole clinical journey, we must cultivate effective communication which builds trust and creates comfort for patients from the start.

To understand what patients and their caregivers need, answer any questions or concerns, and build retention strategies that work on an individual level, we must get to know our patients, ask the right questions, and act on the insight.

There are several ways to integrate patient-centred communication into healthcare protocols:

1. Dedicated 24/7 support for patients and caregivers. This means having a person or team who can be reached easily via phone and who are responsible for keeping the patient informed and supported throughout the whole clinical trial.
2. Local rate or toll-free numbers which provide patients with easy access to their support team.
3. Provide feedback after every site visit to ensure patients feel supported, understand what is happening, and have clear visibility on the next stages and what is expected of them.
4. Connect patients with patient associations relevant to the study and disease. By facilitating relevant discussions with patient associations and advocacy groups, you can help broaden patients’ understanding around their participation, making them feel more comfortable, and providing another layer of communication and support that can have a positive impact on a trial’s success.

5. Leveraging New Technology To Support Patient Retention

New and emerging technologies offer an opportunity for us to better monitor and understand patients’ experiences at every stage of the clinical journey.

Technology allows us to gather large quantities of data, which can be collected remotely and analysed at scale. This means we can shape an understanding of the patient experience at a much faster rate, allowing for more targeted and effective interventions which aim to reduce drop-out rates.

An increase in use of wearable devices – and the continuous stream of personal health data they can provide – has led to the rapid adoption of wearable technology in clinical trials. By 2021, the number of remotely monitored patients is expected to reach 50.2 million.

Wearable devices can give us data which offers direct insight into the patient experience, as well as their physical state. This boosts patient retention because any dip in patient sentiment can be responded to immediately.

Wearables also allow patients to participate in some parts of a clinical trial without the additional stress of travel and sometimes invasive experience of onsite testing. Patients can instead take part remotely, from their own homes, and their physiological and psychological state can be carefully monitored.

Read more: How Wearable Devices Are Revolutionising The Patient Experience Of Clinical Trials

Using Data To Improve Patient Retention

Clinical trials are becoming increasingly data-driven for good reason. Data captured through wearable devices and mobile apps allows us to proactively capture patient sentiment and health data at scale, evaluate their experience and how they’re feeling on a regular basis, and turn this data into actionable insight.

Armed with this insight, we can intervene, make necessary changes, and provide support before a patient decides to leave the trial. Here are some key ways real-time, real-world data capture can help us improve clinical trial outcomes:

1. Keeping patients safe by identifying adverse health effects quickly, sometimes immediately
2. Improving patient satisfaction and patient retention by providing a vehicle for two way communication
3. Delivering actionable results by enabling HCPs to intervene before an issue becomes critical
4. Reinforcing the sponsor’s focus on the patient by continuously reminding them of the importance of patients’ wellbeing

Read more: The Importance Of Data Capture, Analysis, And Reporting For Patient-Centric Clinical Trials

In Summary

The evidence that patients are less likely to drop out of clinical trials when they feel valued and supported is undeniable. And to ensure high levels of patient satisfaction during clinical studies, we must put the patient first at every stage of the journey.

To resolve the most common issues around patient retention and recruitment which impact clinical trial success, we need a shift towards patient-focused protocols. This means using patient feedback and data to improve the overall experience and remove burdens on patients and their caregivers, therefore ensuring the success of the clinical trial.