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Patient involvement to find new treatments

How the patient voice informs research

One of the reasons you can trust information shared by AbScent is that we work with the leading researchers and clinicians in the field of olfactory dysfunction. They generously share their expertise and time, and we can be sure that the information we share with the wider world is correct and current. 

 

“Desperate need to find new treatment”

These positive relationships mean that research teams often approach AbScent to find people willing to take part in surveys, studies and research projects. In response to these requests - and to avoid bombarding the AbScent Community - AbScent set up a process to make it easier to find those people interested in taking part in research. This recruitment process was the subject of a study in its own right, and a paper published in January 2022 found that this is an effective way to recruit the right people for research.

Successful selection

The study found that by using the AbScent process for patient recruitment they achieved a 90.7% response rate from those who participated. This is great news for researchers who need to demonstrate they achieved a significant response from the group involved.

In addition, all of the participants said they were willing to take part in future research, and nearly two-thirds would consider being part of a medical or surgical study. Again, this is great for researchers who need to take cohorts of patients through different stages as they search for treatments.

The authors were pleased with the high level of engagement from the patients who took part, saying that this means of recruitment meant they were “able to successfully select a population of subjects with the right condition, willing to participate.”

What this means for research

Publishing findings in the journal Medicina demonstrates that this is an effective way to recruit research participants. It therefore becomes accepted by the research community as a viable route to better recruitment. 

Researchers can talk confidently about effective recruitment when they design their studies, which in turn is more likely to strengthen their bid to win funding. It also gives researchers the confidence to approach AbScent knowing their request will result in patients who meet their given criteria, overcoming many of the challenges involved in recruiting from the general population.

The AbScent recruitment method also means that researchers can quickly select people based on criteria like their proximity to a research centre, the type of smell disorder, their age, gender and any other factors related to that particular study.

The Patient Voice

By making it easier for researchers to recruit participants, it could mean that more studies involve more patients. And we’ve seen from several papers published over the last couple of years that the patients’ experience unlocks new avenues of research and poses questions that scientists and doctors perhaps hadn’t considered to be important. This is what we mean by the Patient Voice: the means to make your experience heard.

 

If you are interested in participating in research that could help to end the misery of smell disorders, please take a look at the research section on the website and follow the links to register your interest.

 

This article refers to The Role of Social Media in Improving Patient Recruitment for Research Studies on Persistent Post-Infectious Olfactory Dysfunction by Alfonso Luca Pendolino, Annakan V. Navaratnam,Juman Nijim,Christine E. Kelly, Premjit S. Randhawa andPeter J. Andrews

Medicina 2022, 58(3), 348; https://doi.org/10.3390/medicina58030348

March 09, 2022