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A big thank you to Nathalia who wrote this weeks blog on OCD research participation.

The worldwide prevalence of OCD is approximately 2% of the general population, and the average age of onset is 19.5. As debilitating as it already is, OCD is also highly comorbid with several mental health conditions such as ADHD, Bipolar Disorder, other anxiety disorders (i.e. PTSD, Panic Disorder, general phobias etc.), and Substance Use Disorder. OCD is understudied in research and most studies that exist are clearly outdated and lack patient participation. This marginalization of OCD is detrimental to the patients and their wellbeing. One way to put an end to this is by taking matters into our own hands, and by proactively contributing to the new research studies that are being undertaken.

As a psychology student, I often get asked the question “Should I participate in research?” and my answer is yes. Absolutely.

What does it mean to participate in research studies?

Patient involvement may be described as “the participation of patients or users based on their individual experience with a disease or with specific treatments.” The following are different forms of patient involvement in research:  participation in treatment decisions, in service development and evaluation, in psychoeducation and training, and in research activities. Patient participation in research is crucial as it allows researchers to take into account the patients’ perspectives, interests and therapeutic goals. For instance, patient involvement helps researchers ask more accurate research questions and build treatment models that are tailored to the patients’ experience of the disorder. By participating in research, you can help improve clinical practice and general treatment outcomes. Additionally, research plays a vital role in improving the quality of treatment and understanding of OCD, which is very much needed. Your involvement and contribution to research offers invaluable insights into the mechanisms of OCD and ensures that high quality research is being conducted to bring on real benefits for patients in their daily lives.

To the best of my knowledge, patient involvement in OCD research is rather scarce, especially in comparison with research on Depression or PTSD. This limitation is due to the persistent prejudices related to OCD, such as the idea that people with OCD are difficult to treat. This stigmatization does nothing but hinder the progress towards finding evidence-based treatment options of quality. However, recently patient involvement in OCD research has been growing; indeed, researchers are now calling for more patients to participate, as patient involvement could revolutionize research findings and treatment outcomes.

What are the benefits of participating in research?

A primary benefit is the contribution you make towards the advancement of science. Researchers often have a difficult time generalizing their findings to the population due to the fact that most of the time they are faced with very small samples. Indeed, there is a very small pool of people who actually participate in research and most of the time these are students or convenient samples, which aren’t the most reflective of reality.  Another benefit would be the fact that you would be directly and proactively contributing to the improvement of services and health outcomes. People who take part in research contribute towards the care, treatment and wellbeing of countless numbers of people who are suffering from OCD among other mental health problems.

Participation in research is not merely an altruistic contribution to scientific findings; it can also provide many important positive benefits to the participant on an individual level. These benefits include: a sense of empowerment by taking an active role in one’s own health care; a feeling of satisfaction that comes from knowing that you are proactively contributing to the improvement of health outcomes for future generations; a decreased sense of alienation through interaction with the research staff members who truly understand the severity and complexity of the problems you face, and their toll on various aspects of your life. Another personal benefit is the possibility of being the first in line to receiving new and improved treatments. Additionally, most of the time you will be monetarily compensated for your participation, which is always a great bonus!

Where can I sign up for research studies?

Depending on where you are in the world, there are several websites and databases that contain all the relevant information you need to sign up. Several universities and hospitals are constantly looking for research participants so you can always find information on their websites. Additionally, the International OCD Foundation (IOCDF) website is home to a long list of research studies, check out IOCDF.org for more information. Additional websites looking to expand patient participation in research are OCDtrial.org and OCDuk.org.

Don’t forget to check out Orchard’s list of studies you can participate in here.

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