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Hard to Reach Patients

Patient research is a current hot topic. Given our experience in this area we were invited to share our point of view at the 2016 EphMRA conference in Frankfurt, Germany.

As market researchers we hear a great deal about Patient Centricity - it’s certainly not a new idea but it does seem to be the current hot topic.
Given our experience in this area we were invited to share our point of view at the recent EphMRA conference in Frankfurt, Germany.

The session was highly interactive and generated a great deal of interest, and so we thought it might be useful to summarise our presentation, and the resulting discussions, for those unable to attend.

It is true to say that genuine patient centricity is all about improving care experience - it’s built on developing a deep understanding of the challenges of severe diseases together with an appreciation of the broader needs and wishes of people; patients and their families and carers who are living with these, often chronic, diseases.

Clearly, a better understanding of the patient experience is becoming increasingly important. When designing such a project the biggest challenge, from a fieldwork perspective, is identifying and recruiting the correct participants.

There are several tried and tested approaches for patient recruitment, all of which have strengths and weaknesses and the optimum approach is very dependent on the projects’ objectives and the population of patients we are seeking to target.

These include:

  • Online recruitment
  • Recruiting through HCPs
  • Recruiting through patient organisations/help/support groups
  • Social media
  • Personal recruiting at conferences/patient events

To simplify, we can consider the most suitable approaches for 2 “segments” – “easy to reach” and “hard to reach” patients.

Easy to Reach : Online recruitment; Social media; Patient organisations/help/Support groups

Hard to Reach : Recruiting through HCPs; Patient organisations/help/Support groups; Conference/ advocacy events /other patient events

This seems fairly straightforward but we must remember the devil is always in the detail; what, exactly, defines an “easy to reach” or “hard to reach” patient?

If we consider, for example, diabetes patients:

  • N=1,000 diabetes patients for a study is perfectly feasible
  • Type 2 Diabetes patients on bolus insulin. Less easy, n=500 is feasible.
  • Type 2 Diabetes patients on bolus insulin and switched in the last 6 months to a different bolus insulin. Much less easy, n=50 is challenging
  • And then clients might ask for these to be interviewed in a viewing facility, meaning that only the recruitment of 2 or 3 respondents might be possible

In addition, from experience we know that only a small proportion of patients would even know that the product they switched from was a Bolus, and whilst we can certainly explore this through the screening process it might not always be possible to know for sure.

There was a good discussion around recruiting “hard to reach” respondents through HCPs, and it was interesting that the overwhelming consensus was that this should be considered a last resort as HCPs are increasingly unwilling to help recruit for research. Though this can be overcome to some extent if the client is prepared to gain ethical committee approval for the study, the downside to this approach is the time necessary for such approvals to be granted.

We did mention at the conference that we are fortunate in that we have a large cohort of physicians who recruit patients for us for large phase IV/non-interventional studies and we find that, because of this relationship, they tend to be more willing to assist us with recruitment of patients for market research studies too.

As an action point the conference was in general agreement about the need to be realistic with clients about what is feasible and be very conscious of the ethics, professional guidelines and rules on data protection when recruiting any patients - especially when vulnerable patients are involved.

In conclusion, the consensus was that companies such as Medicys have a vital role to play in helping our clients to educate the end clients on what’s feasible and reasonable in the area of patient research, in order to both ensure we comply with all appropriate guidelines and to encourage realistic and achievable samples sizes that employ suitable methodologies.

If you would like to discuss our service and capabilities, then please do contact us.