Just minutes ago I went live with my new endeavor, The Research Loop. Quite simply, it’s a website where patients and caregivers who have read a research article can submit feedback to researchers. It’s an idea that I hope will elevate the patient and caregiver voice in research and transform the research process and synergistically enhance initiatives that already exist to include patients and caregivers in research.
If you want to learn all the ins and outs of The Research Loop you can head on over to the page and explore the site. In addition to the feedback forms, I’ve posted resources and educational materials to help patients and caregivers better understand research and how they can get involved. I’ve also written a white paper which you can download here: The Research Loop: Transforming the Research Process.
But I’d like to tell you here a bit more about the story behind The Research Loop.
A few years ago, I started setting Google Alerts for scholarly publications because I wanted to read the latest research on my illnesses – specifically borderline personality disorder and diabulimia. My doctors and therapists were failing me and I remained ill – often suicidal or emotionally labile and with a HbA1c creeping up to 19 (normal is below 6, type 1 diabetics are doing okay if they’re around 7). I knew it was up to me at some level to try to understand what was wrong and how what treatments might be out there to help me.
I started sifting through all of the alerts and reading as many articles as I could access. Then I started putting the research together in primers (I’ve posted the Diabulimia Primer on here but have a long way to go on the Borderline Personality Disorder Primer) that could help explain my illnesses to providers. And as I read more and more, I realized that I had feedback for the authors of these articles. Questions about design methods and the conclusions they came to and even quite simply wanting to thank them.
So I emailed the researchers my feedback.
And they liked it.
They really liked my feedback. In fact, I even built relationships with a few of them that continue years later.
A few months ago, while catching up on new research articles and giving feedback to researchers, I had the thought – what if I automated this process? What if I could make it so every patient or caregiver who read research and had feedback could submit that feedback to researchers?
I know there are many patients and caregivers out there that are invested in research and have valuable feedback to offer. I know there are many more that want to take part in research efforts but for various reasons do not have the opportunity. What if I could provide those people with a platform and help their voice be heard?
Thus started the germ of an idea that would become The Research Loop.
I do not know how successful it will be, but I think it is worth the experiment. The concept fits nicely with the work of PCORI (where I was once a merit reviewer), SPOR (out of Canada), INVOLVE and The James Lind Alliance (both out of the UK), Involving People in Research (out of Australia), open access efforts, data sharing initiatives, patient-engagement and patient-centricity movements. It allows people who are not close to a research center or not able to travel to one to be involved in research. And the feedback submitted can affect every aspect of the research process. Again, if you have some free time, read the white paper as it goes over all of this.
I do know that researchers want feedback.
Nearly two years ago, I read an article entitled entitled: When Social Inclusion is Not Enough: Implicit Expectations of Extreme Inclusion in Borderline Personality Disorder in Personality Disorders, by Dr. Chiara De Panfilis, a researcher in Italy. The article elucidated an issue that I’ve encountered for years – that even when I’m included in an outing or event, I often wind up feeling worse off. But this phenomenon that made me feel like an awful person seems to actually be common in those with borderline personality disorder. I immediately share the findings with my support system so they could understand a bit better behavior that can often frustrate them. And I wrote back to Dr. De Panfilis:
Thank you for sharing this article with me. I felt it was very well done and to be honest, very accurate. In fact, I passed it on to my friends and some borderline personality disorder advocates (primarily family members with BPD) so that they might understand why social situations are so frustrating for me personally. I myself have borderline personality disorder and often experience what you describe in your study – a sense of rejection even when included and a need to be extremely wanted. I know that this particularly frustrates those close to borderlines as they fell they are really trying to help us but their efforts never seem enough. This article can help me explain that yes – they are trying to include us and yet it still isn’t enough. It’s not anyone’s fault but will require a lot of work to overcome.I would hope that in future endeavors you might look at ways this effect could be mediated. I know many could benefit.Thank you again and best wishes in your endeavors.
To my surprise she responded with the utmost gratitude for my feedback:
Dear Erin,Actually I need to thank you for your touching words. I’ve shared them with my co-authors and we all felt this was the most rewarding feed-back we could ever think of for our study.This is so rare for researchers…Empirical research is sometimes regarded as far away from “real world”, but in fact our main goal was a practical one- we were struggling to find out the potential reasons why people with BPD feel so often rejected, regardless others’ accepting or excluding attitude. It was so important for us to know from you that we were on the right track…I was also greatly impressed by the clarity of your explanation of the experience to be rejected by others while at the same time needing of being “extremely wanted”, as you said. I think that your words nicely summarize what we were trying to demonstrate empirically. I was wondering if you could give me your permission to show your thoughts on that when presenting this study results at meetings, conferences etc. (of course anonymously)…..Could this work for you? I’d guess that your feedback will strengthen the interest in this topic and encourage further research…In any case, please be aware that receiving your email has been so important for me. I will now keep pursuing this line of research with a renewed hope that this could be of some help for individuals with BPD. I do believe that this is the real “engine” of research and wanted to express my gratitude to you.Best regards,Chiara
I had this very interaction in mind while creating The Research Loop. And as I got closer to my release date, I contacted Dr. De Panfilis again to tell her of my idea and ask if I could quote her response. She was very excited to hear of the idea and gave her consent to share her email. And then she told me “As a minor note, last year we won the ISTFP research award with this article on social inclusion, and we showed your words (anonymously) about your experience to the audience when presenting our work. Everyone was so touched. So thank you again.”
Hearing this solidified my resolve that The Research Loop should go forward. While I am trying to be realistic that this endeavor may not go far, I know that there is the chance that even one patient or caregiver might offer their feedback and help impact research. And that may be worthwhile in itself.
I hope to see you over at The Research Loop or following @TheResearchLoop on twitter. Let me know what you think. I’d love your feedback!