We’d love to start a list of other patient-authored papers and posters – let us know in the comments! We know of Dana M. Lewis & Scott Leibrand’s poster about #OpenAPS in June – who else??
We’ve written before about e-patient Sean Ahrens and the Crohnology community he started. In my view the most important post of the series was four years ago: Crossing a threshold: the e-Patient movement enters wave 2. That post linked to an article in Fast Company (a business magazine!) about Sean.
Now, could this be wave 3? We’re starting to see e-patients as authors in medical journals. That is a culture change, folks.
In this case it’s not just an opinion piece – Sean devised and conducted an experiment on himself! Here’s his Facebook post the other day on it:
So I think this is kind of big news: I just got published (in print) in a major medical journal, the American Journal of Gastroenterology (AJG)!
I submitted a 1500-word scientific report of the self-tracking experiment I did on myself taking pig whipworm (an intestinal parasite) for my Crohn’s in 2010. For this experiment, I had mail-ordered the pig whipworm from the internet, shipped via Thailand in small vials. Yeah I know that sounds kinda crazy. I did this experiment from March – August 2010, intentionally ingesting TSO (Trichuris Suis Ova), a non-FDA approved treatment, every two weeks, and recorded my changing symptoms in a digital tracker I built for myself.
While I’ve given talks on this self-experiment at various health and medical conferences, the detailed report of my results have remained unpublished up until now. And they are published in a major medical journal by Nature! That feels pretty good ;)!
Unfortunately, the way medical journal publishing works is that unless you have paid access to Nature, you cannot read my publication (entitled “Opening (and Swallowing) A Can of Worms to Treat My Crohn’s Disease”). And legally I have given up copyright ownership of my submission to Nature (kind of a bummer, right?) so I can’t share it with you here; however, after 6 months from when it appeared in print (July 2016), I have rights to re-publish it online for you to view—which I will do, in December 2016.
Since you can’t read it now, I’ll give you the summary:
During 2010, my Crohn’s symptoms were very active. During most all of the experiment taking pig whipworm, it appeared the whipworm was not helping: my symptoms remained very active. Because taking care of my health was priority #1 and doing the experiment was priority #2, I started a dramatically strict diet (called the Specific Carb Diet) about 2/3 the way into my study because I needed to do anything to quell my symptoms; I continued this diet for years afterward. Three months after I stopped taking the pig whipworm (and seven months after starting the diet), my symptoms dramatically improved (and nearly disappeared); in November 2013 my physician declared after a colonoscopy that my Crohn’s showed signs of “remission with no visible inflammation”. I believe that one of the two (the diet or the whipworm) helped bring me into remission, but I cannot say which one, or if it was the combination of the two.
As you may know, I think it’s super important for the advancement of medical knowledge for patients who do self-experiments (or just treatment variations, diets, etc) on themselves to record and publish those so we can build up a resource of patient’s real-world (and otherwise unrecorded) collective knowledge. This will help medical information to flow from patients up.
That’s my report for now, and I plan on publishing the 1500-word full report once I have rights to do so in December 2016.
In a comment he added: “Luckily the AJG now solicits these kind of studies via their “Red Section” which is dedicated to patient submissions. I’m not sure a lot of patients are submitting self-tracking study reports like this, but more should. And hopefully more journals are opening up to accept from patients even if they don’t have PhDs.” (Sean himself doesn’t – “just” a bachelor’s degree.)
I hadn’t heard of a journal having a section dedicated to patient submissions – how great! Why doesn’t everyone do that??
I think this is an absolutely brilliant idea, and it is amazing that this elephant has been avoided so long in the room. It is as if all restaurant reviews have been written by chefs in the past. Of course we should have the point of view of patients!! Wonderful idea.
As previously noted on this blog, Circulation: Cardiovascular Quality and Outcomes publishes articles by patients with cardiovascular disease or their family members. The two most recent:
Jen Hyde, Preventative Measures
http://circoutcomes.ahajournals.org/content/9/4/441.full
Peter Elias, From the Other Side of the Stethoscope
http://circoutcomes.ahajournals.org/content/9/3/338.full?sid=e7876f3f-37e9-4cea-a2ca-231511f5fa89
Feel free to email me for more information: mannm@comcast.net
Thank you yet again, Marilyn!
Hopefully that list will soon grow so big it’ll be hard to keep up with (perhaps the librarians reading this can suggest ways we might systematically tag such articles…)
But just to add to the list:
Cathy Wolf has ALS and was a co-PI on the ALSFRS-EX extension items (detailed here: http://www.brownalumnimagazine.com/content/view/2218/40/) Wicks P, Massagli M, Wolf C, Heywood J (2009) Measuring function in advanced ALS: Validation of the ALSFRS-R extension items, European Journal of Neurology, 16(3):353-359
John Stamford, who lives with Parkinson’s gave a plenary panel at ISOQOL that was written up here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3929022/, Wicks P, Stamford J, Grootenhuis MA, Haverman L, Ahmed S (2013) Innovations in e-health, Quality of Life Research, p23(1):195-203
Patient advocate Lisa Cone co-wrote this piece on patient involvement in pharmaceutical development http://www.sciencedirect.com/science/article/pii/S1098301516304326, Lowe M, Blaser D, Cone L, Arcona S, Ko J, Sasane R, Wicks P (2016) Increasing Patient Involvement in Drug Development. Value in Health, Available Online May 24th, 2016
And while it hasn’t been published formally, Tamara Michel developed a new pain rating scale for MS on our Open Research Exchange that was picked up by the WSJ: http://www.wsj.com/articles/the-search-for-a-better-definition-of-pain-1427736432
I should also of course draw attention to the BMJ’s outstanding “What your patient is thinking” series (http://www.bmj.com/specialties/what-your-patient-thinking) and highlight the Journal of Participatory Medicine (http://www.jopm.org/), the “Narrative Matters” section of Health Affairs (http://www.healthaffairs.org/narrative-matters/), the journal “Research Involvement and Engagement” (https://researchinvolvement.biomedcentral.com/) and the journal “The Patient” (http://link.springer.com/journal/40271).
Finally the “Patients Included” group came up with criteria for journals that includes regular patient authorship as a pre-requisite (https://patientsincluded.org/journals/accredited-journals/).
We hope that these are just the first of many!
Terrific contributions, Paul!
Re Parkinson’s, I feel stupid – I should have known better! We should generate that list – e.g. “Parkie” Perry Cohen has authored Ethical Issues in Clinical Neuroscience Research: A Patient’s Perspective [2007], in which patients speak up loudly on what they feel is severely misguided paternal concern on “sham surgery,” in which some patients in a study get a hole drilled in their head without having any treatment delivered.
I had not heard of The Patient! And thanks for drawing attention to WYPIT (What Your Patient Is Thinking).
Your list makes me realize that my headline wasn’t what I really meant – I was talking about a patient creating and doing publishable research. Nonetheless, I agree that the time has come to create this list!
“Trustworthy guidelines – excellent; customized care tools – even better”
http://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-015-0436-y
Glyn Elwyn, Casey Quinlan, Albert Mulley, Thomas Agoritsas, Per Olav Vandvik and Gordon Guyatt
BMC Medicine201513:199
DOI: 10.1186/s12916-015-0436-y © Elwyn et al. 2016
Casey, which of those is a patient, or am I misconstruing your intent?
Ha – Sean’s paper just got a big article in Buzzfeed, the hot-hot social media site!
This Guy Swallowed Parasitic Worms On Purpose — Then Became A Published Scientist