The use of social media has massively increased in recent years and it is estimated that over three billion people worldwide are currently engaging. No longer merely a tool for personal communication, it is now commonly used to help achieve business goals – and offers huge potential for the recruitment and retention of patients in clinical trials. However, despite its value, social media is a highly underutilised strategy by pharmaceutical companies. A report by Fisher BioServices found only 11% of trials leverage social media for recruitment. In light of the ongoing challenges in obtaining sufficient participant numbers for trials, there’s never been a better time to log on.

Before using social media strategies to engage people in clinical trials, it is imperative to understand the reasons people choose to participate or not. Research published in Clinical Trials Perspective has identified seven different types of patients and their motivation for becoming involved in trials. ‘Innovative patients’, for example, look for new developments and technologies. ‘Desperate patients’ search for any available treatment options. ‘Healthconscious patients’ are keen to get a high level of attention from physicians. ‘Economic patients’ want to receive free treatment and support. ‘Impatient patients’ desire fast access to physicians and new information. ‘Altruistic patients’ want to do something good for society. Finally, ‘bored patients’ are keen to do something unusual.

People often have more than one of these intentions and their reasons can change over time. For example, those who are younger tend to be more innovative, desperate or impatient. The elderly are more likely to be health conscious, economic or altruistic. Social media can be used to address the different motivations of these patients, particularly those who are younger and tend to be more engaged with technology.

There are also a number of reasons that patients may choose not to participate in clinical trials, including a lack of information about what is involved. Some may not consider their involvement to be beneficial. Others consider participation to be cumbersome and not worth their time. Sometimes, people would like to be involved but do not consider themselves to be eligible due to poorly communicated exclusion and inclusion criteria.

Wolfgang Eglmeier, head of the Centre for Clinical Trials at Witten/ Herdecke University, has 25 years of pharmaceutical industry experience, and strongly believes that social media can help to overcome these issues. However, this demands a strategic and long-term approach, which should be implemented before the trial recruitment phase even begins.

Centre of attention

Ensuring that a trial is patient-centred is key to boosting willingness to participate, but this rarely happens in the design phase.

“Clinical trials are often planned in some remote office and there is no real focus on patients,” says Eglmeier. “It is sometimes forgotten that a person has to buy into the study and dedicate part of their lives to a trial.”

Asking patients directly about their inclination to become involved can help to pre-empt potential barriers to participation. This includes questions such as: “What are their needs?”, “What are they willing to devote to a clinical trial?”, “What can they do?” and “Is a clinical trial really suited to them or is it too cumbersome?” Having this dialogue is difficult when using traditional methods, whereas social media provides the ability to reach a large audience and gain feedback quickly.

These platforms can also be used to provide patients with material to help them with their decision to participate.

“Things like Wikipedia or YouTube can be helpful for giving out information,” explains Eglmeier. “You can use these for training materials for the disease, the drug being used and also for self-assessments.”

Social media can be used to address the different motivations of patients, particularly those who are younger and tend to be more engaged with technology.

Rules of engagement

Although there are clear benefits to using social media for patient recruitment, it is no easy ride.

“It’s a lot of investment, in terms of money, knowledge, experience and time,” admits Eglmeier.

Data privacy is another big hurdle to navigate, especially in the EU. The governance within the EU makes it difficult to collect personal data. This also threatens patient confidentiality, so a lot of planning is required to ensure that these challenges are anticipated and addressed. This is not only a problem to do with patients.

“The other issue is confidentiality of the company’s data,” Eglmeier notes. “This should also be kept private and should not flow out to competitors, for example.”

However, such challenges are not insurmountable. Patient organisations can be helpful throughout the recruitment process. However, it is imperative to be honest and open with them from the start about who is behind the trial.

Engaging with these groups can also be highly cost-effective.

“At the beginning, these patient support groups are doing the job for you and can even provide you data later on,” explains Eglmeier. “Normally, you have to pay for data.”

Building connections with these various groups does require careful management, however.

“You need a contract, a clear share of responsibilities and information about the purpose of the data being collected,” says Eglmeier.

Information overload

In addition to finding fruitful avenues to engage with patients, providing sufficient information about the trial itself is paramount. This includes the provision of contact information; inclusion and exclusion criteria; details about how long it will take; what is involved; and whether there any costs or benefits from participating.

However, providing information must be done with caution.

“The more information that you provide to a patient, the more you get into a situation where you are using software that would be categorised as a medical device,” warns Eglmeier. This requires additional rules to be met.

Software as a medical device is defined by the International Medical Device Regulators Forum (IMDRF) as “software intended to be used for one or more medical purposes that perform these purposes without being part of a hardware medical device”.

Ensuring that information-sharing does not fall within this remit is key to avoid facing delays or penalties in the recruitment process.

Navigating miscommunication is another important issue when using social media.

“You should never give the impression that a person is entitled to participate in a trial – the final decision is made by a physician,” warns Eglmeier. “Patients can decide whether they want to participate but cannot force themselves in.”

Different strokes

It is also important to consider those who may be excluded when using social media.

You should never give the impression that a person is entitled to participate in a trial – the final decision is made by the physician.

For this reason, these online platforms cannot yet replace more traditional recruitment methods.

“It is an add-on,” says Eglmeier. “There are still constraints; for example, the informed consent procedure has to be done by a human being.”

Another limitation is difficulty in targeting population groups who are less active on these platforms.

“Social media often only addresses more technology-prone people,” says Eglmeier. “People in their 80s will likely never touch a smartphone so it’s difficult to contact those people.”

Patterns of engagement have also been shown to differ considerably across diseases.

“Patients with cancer or diabetes are more involved with social media because they are long term diseases,” explains Eglmeier. “Nobody is running around on social media trying to get information if you just have something like flu.”

Geographical location can also affect social media activity and willingness to participate in a clinical trial. In the UK and a number of countries in Europe, high-quality medical care can be obtained at no or very little cost. However, in countries like the US, it can be expensive for patients, which can make participating in a trial a more attractive option.

Mind the gap

Once a trial is over, participants tend to be forgotten about. Social media provides a useful way of maintaining engagement, which can aid recruitment for future trials. Giving feedback to participants about the trial is particularly valuable.

“At the end it is quite helpful to spread information about what really happened, the number of patients, how many received the drug and what the outcome was,” explains Eglmeier. “That gives them an appreciation, not just for the drug, but for the whole trial.”

However, this kind of communication rarely occurs in an effective or timely way.

“Currently, pharma companies collect the data, run the stats, publish the results and give information to physicians who supposedly give that back to the patient,” says Eglmeier.

This process can last three to four years after the trial has ended.

“In some cases, the person has already died by that time point, if they have a terminal disease,” says Eglmeier.

Being forward-thinking can really pay off. For example, social media can be used to promote participation between trials.

“We have this wonderful phrase from our national soccer team ‘Nach dem Spiel ist vor dem Spiel’ which translates to ‘after the game is before the game’,” says Eglmeier. “In clinical trials, we can think about this as ‘after the trial is before the next trial’.”