It's out! Your voices... in print.

Many readers will remember participating in a lengthy survey organized by a research team at Johns Hopkins in November to December of 2017, through a link in KeratoScoop.

I am excited to say that the research results have been published and accompanied by an editorial in JAMA Ophthalmology.

Ian J. Saldanha, MBBS, MPH, PhD; Rebecca Petris; Genie Han, MSc; Kay Dickersin, MA, PhD4,5; Esen K. Akpek, MD Research Questions and Outcomes Prioritized by Patients with Dry Eye JAMA Ophthalmology, published online August 16, 2018

A quick excerpt from the abstract:

Among the 109 outcomes identified in existing research on dry eye, patients rated 26 as important. Ten of these 26 were unpopular in existing research, with fewer than 10% of 158 studies reporting these outcomes. Of the 10 most important outcomes, 9 were associated with symptoms or quality of life. The 3 outcomes rated most important by patients were ocular burning or stinging, ocular discomfort, and ocular pain.

A bit of context for this paper...

Last year, Saldanha et al published a study titled "Gaps in Current Knowledge and Priorities for Future Research in Dry Eye" (Cornea, 2017, 36(12):1584-1591). They went through a very interesting process of creating a set of questions to ask clinicians their priorities for dry eye research questions, and the study was based on survey results from 75 clinicians. In the present study, we sought to obtain answers from patients about these same questions and ask patients what dry eye "outcomes" mattered most to them. The patient response was overwhelming, and the data clearly highlight how differently dry eye patients and doctors view dry eye research.

To patients, I know full well that the results of this study will be completely unsurprising and underwhelming. We all know our world is dominated by symptoms, and this study was not about finding solutions, rather, about how we ourselves would define solutions given the choice. So the importance and the potential impact in the medical research world may be highly unintuitive to many of us as patients.

Nonetheless, it matters - A LOT - for our future, and I am so grateful to everyone who took the time to participate. I'll be blogging more about this in the coming days and weeks because there are many facets to the significance of this kind of research being published at this particular time. Today, I just wanted to get the links up and start encouraging discussion.

...And what it means to get THIS study into THIS journal

With an impact factor of 6.669 (2017), JAMA Ophthalmology ranks in the top 5% of medical journals. For those of you not familiar with journal impact factors, it is a measure of how frequently, on average, articles from the journal are cited in future research. - Not to be confused with perceived journal quality, which can be quite different, and of course many high impact journals aren't the most common go-to for the best dry eye research. (My favorite ophthalmology journal is The Ocular Surface which scores 5.53, and I always keep a close eye on Cornea which scores only 2.464.)

But we really, really need visibility for the issue of what PATIENTS' priorities are for dry eye research, and getting research published in a high impact journal maximizes our chances of raising visibility and awareness.

What you can do to help

For anyone motivated to help improve the standard of care in dry eye disease with an emphasis on quality of life, I would encourage you to take any one or more of the following steps:

Read the abstract
Post comments and questions to get discussion going
Share it on social media
Print it and share it with your eye doctor
Local media coverage? Consider reaching out to a medical reporter in your local media and asking them to cover this. Even independent of dry eye itself, this study is groundbreaking because of the number of patients that participated. In research circles, 420 patients for this kind of thing is HUGE!
Reach out and thank the authors! (And no, I don't mean me, obviously, all I did was help with getting the data, and giving feedback on drafts.) Some of you probably already know Esen Akpek, who is a well known cornea specialist at Johns Hopkins. Ian Saldanha, who did such an amazing job on this paper, is an epidemiologist at Brown University and is engaged in ongoing work to promote the establishment of core outcome sets for dry eye research, which is something we badly need. I would love for every member of the team to hear from patients about what it means to them to get our voices in print.