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Global Perspectives™: Recruitment and validation of patients via social media for clinical studies

Social media is a great way to find potential patients for your clinical study, but in order to produce reliable data, patients must first be validated.

Social media is becoming an increasingly fruitful way to recruit patients for market research studies. 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.

At Global Perspectives™ we recognise the importance of process and validation during the social media recruitment process. This enables us to minimize risk and ensure that patients are who we think they are.

Global Perspectives™ are here to help you recruit patients via social media quickly, accurately and reliably.

Recruitment methods and process

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 find patients for market research surveys in a number of different ways.

Via patient association social media pages

Global Perspectives™ 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). Patients will be prompted in the advert to contact either the recruiter or the patient association to register their interest in the study. The recruiter will then call the patient to go through the screening process.

Via social media targeted advertising

Global Perspectives™ 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 searching or talking about a certain disease recently. 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 searching in Google for Hodgkin Lymphoma or who have liked pages about Hodgkin Lymphoma on Facebook. We can also select patients according to their geography.

Validation of patients

Whichever way we find patients, it is essential to be able to validate patients to ensure that they are who they say they are.

Recruiter validation

All patients who show an interest in the project via social media are screened by an experienced professional healthcare recruiter. This gives a chance for the recruiter to discuss the project with the respondent. We also recommend that the recruiter goes through the screening questions with the respondents so we can ensure that the respondent meets the eligibility criteria. This holds true even when recruiting for online surveys.

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 them for market research studies that later 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

Semi-automated validation

At Global Perspectives™, we are working on a semi-automated validation process for when recruiting patients via social media. This process may be similar to that used by online panel companies to validate their panel members and may use tools such as “respondent profile checks” by comparing a respondent’s social media profile to a profile questionnaire. We expect to have more details about this later in the year.

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.

Global Perspectives™ – Health State and Time Trade-off Surveys to determine Quality of Life

At Global Perspectives™, we are becoming very experienced at undertaking health state and trade-off surveys across multiple countries among the general population and certain patient groups.

We have undertaken 15  TTO projects in the past 2 years in 9 different countries, using both lead-time methodology and the standard TTO approach.

The key to the success of these projects is in the training of the interviewer teams and monitoring of the resulting interview data. It is essential that interviewers are very comfortable with the TTO methodology and can guide and prompt respondents in the correct way to help achieve a maximum proportion of valid interviews.

The procedure we recommend is:

  1. All interviewers take place in a training call led by the client – we recommend the client leads this call, as each TTO methodology is slightly different. Global Perspective’s™ Project Manager will also take part in this training. A TTO interviewing team should be made up of 4-5 experience market research interviewers
  2. The GP Project Manager then undertakes a second training call, focusses on role play and comprehension testing to ensure that the interviewers know exactly what they should be doing during the interviews
  3. We check the data after the first day of interviews, say on the first 10 records and the client checks the data to make sure it looks like the respondents and interviewers are following the TTO interview script correctly and that the respondent is making logical choices between the health states
  4. If all is good, then the remaining 90 interviews take place
  5. A similar check is then done on all 100 records to see whether any respondents need replacing
  6. As we continue to manage TTO projects in certain countries then we try to use the same interviewer teams so that they can build on their previous experience and training

As Global Perspectives™ are experts in patient recruitment, we can either recruit members of the general population or specific patient groups to take part in the TTO interviews.

For more information, please contact Sonia López.