Global Patients: Engaging patients via social media for clinical non-interventional studies

Global PatientsTM is the patient face of Global Perspectives. Our Patient Supporters at Global Patients encourage patients to take part in clinical non-interventional studies and support them at every step through the study process.

Our Patient Supporters engage patients via physicians, patient associations, our own Global Patients database and increasingly so, via social media.

Social media gives us a fantastic opportunity to communicate directly with large numbers of patients through their smartphones which they carry around with them every day. Patients of all kinds, including hard-to-reach patients often use social media to help find information and support for their disease or condition. This allows us to target and engage patients in a number of different ways:

Via patient association social media pages

Global Patients have agreements with many patient associations around the world. Patient associations will post information about the project on their social media pages (usually Facebook and sometimes on their own website community pages), or give Global Patients the permission to talk to patients on their social media group. Patients will be prompted in the advert to contact either the recruiter or the patient association to register their interest in the study. Our Patient Supporters will then call the patient to go through the screening process.

Via social media targeted advertising

Global Patients have the ability to target patients via Facebook adverts that appear on the patients’ Facebook homepage. The advert appears on the page of those people who have been talking about a certain disease recently on Facebook. For example, in a recent project, we recruited 10 Hodgkin Lymphoma patients in the UK by advertising on the Facebook pages of people who had been talking about (or searching for) Hodgkin Lymphoma on Facebook. We can also select patients according to their geography.

Via the Global Patients Facebook page

Our Global Patients Facebook page is an area where patients can learn about our studies, ask questions about how to take part, and receive feedback from other patients who have taken part in our studies. The page aims to have full transparency so we allow all comments (even if someone has doubts or a negative experience) and we will only remove comments if they could be perceived as offensive. Our study adverts gain many hundreds of likes and dozens of comments as patients are eager to learn more about our studies.

Patient Supporter validation

All patients who show an interest in the project via social media are screened by our experienced Patient Supporters. This gives a chance for the Patient Supporter to discuss the project with the respondent, and then to go through the screening questions with the respondents so we can ensure that the respondent meets the eligibility criteria.

GDPR and Data protection

The screening telephone call is often a good opportunity to talk about the consent procedure or the patient’s rights regarding data protection. Global Patients follow GDPR rules and only capture data that patients have explicitly consented to share with us. We collect consent verbally so that we can screen patients and later collect written (or electronic) consent before the patient can take part in the study itself. Those patients who would like to opt-in to our Global Patients database are given instructions on how to later opt-out during any subsequent communication (instructions are published at the bottom of our emails and as an FAQ on our Global Patients website).

Closed survey links

We do not recommend posting open online survey links on social media. This can be seen as an invitation for fraudulent behaviour, not by the patients, but by other members of the social media platform who are attracted by the survey incentives. Using an open survey link means that anyone in the world can complete the survey and any resulting data cannot be trusted. We recommend using social media to find patients, but then sending a unique survey link to validated patients via email.

Disguised screeners

Whatever way we validate patients, we must ensure that respondents cannot guide the eligibility criteria in the screening questions. If a wide range of potential respondents are invited to complete the screening section then it is important that the screener is disguised to ensure that a respondent cannot guess what options they need to pick in order to become eligible for the survey. If we cannot disguise the official screener then sometimes we will use a pre-screener as part of the social media selection process.

Confirmation of diagnosis

Increasingly, clients are asking Global Perspectives™ to obtain confirmation of diagnosis from patients when recruiting for clinical studies that will be published in a scientific journal. This is an excellent way of ensuring that patients are eligible for the survey and that all resulting data will be valid. Exactly how we do this depends on the patient group, but it can be done in a number of ways:

  • Asking patients to take a validation of diagnosis note to their nurse or physician so that it can be signed by then
  • Recruiting via physicians who also agree to validate the diagnosis of their referred patients (with patient consent)
  • Asking patients to take a photo of their medication
  • Any other proof of diagnosis such as Doctor visit summary printouts or a screenshot of their healthcare patient portal

Social media is just one of the recruitment strategies that Global Perspectives™ use to recruit patients around the world. We are here to help our clients decide whether to use social media recruitment for any particular project, and if so, the best way of reaching and validating those patients. Please contact Joe Waby for more information