Thread by @StefanKertesz

1/This is an update 🧵re: our research on suicides after Rx opioid reduction
Clinical context of SuicIde following OPIOID transitionS
(CSI OPIOIDs)
TL;DR: we're progressing. The pilot study is NOW.
A "bigger" study is coming
We are preparing docs for the funder & ethical review

2/Background: CSI OPIOIDs does *not* seek more statistical papers.
There are already *3* papers that find a tendency of higher suicide event frequency in persons who are tapered versus those who are not:
pubmed.ncbi.nlm.nih.gov/33863865/
jamanetwork.com/journals/jama/…
bmj.com/content/368/bm…

3/I'm going to detour one tweet here on ADVOCACY:
In my role as ADVOCATE, not researcher, I have been decrying the imposition of nonconsensual changes to care of disabled patients, changes lacking evidentiary support, since 2017 (here with @AJ_Gordon ) statnews.com/2017/02/24/opi…

4/BUT: We really need RESEARCH on the suicides deaths for 2 reasons. 1st, there are folks who don't recognize this problem's gravity.
As an example, I'm including video of Dr. Adriane Fugh-Berman arguing AGAINST governmental efforts to study the problem.

5/We need RESEARCH for a 2nd reason.
If suicide actually emerges from a *web of causal and contextual factors*, with prescription change being only one PART of what's going on, we need to systematically try to understand ALL of it.
Conceptual framework here:

6/Starting in 2020, my team initiated public recruitment w/ social media for a "pilot" research survey to find families or friends who have lost someone with pain to suicide, to see if they are willing to communicate. This is IRB-approved at UAB uab.edu/news/research/…

7/For now we will continue and expand this pilot survey. Meanwhile, we continue to do a series of steps required to launch a *larger psychological autopsy study* that will combine public-facing recruitment with (for consenting survivors!) survey, interview and record review.

8/The proposed larger study DID succeed in peer review
We have notice of intent to fund
But the key is that our team is submitting extensive plans to show that we can address, in every detail, the EXTREMELY SENSITIVE ethics, data security and privacy requirements of this study!

9/From the moment @AllysonVarley @AJ_Gordon @PainPtFightBack and I decided a study was needed, we knew the size of the task:
*a detailed scientific plan
*fully accountable to the agencies that govern our ethics
*ethically accountable to survivors and patients with pain today

10/The reason we have gotten this far is the TEAM - I don't have one image of all of us but we are proud to have 2 of the foremost suicide scholars in the world, Thomas Joiner of FSU and Yogesh Dwivedi of @UABHeersink , and an amazing advocate who inspired us: @PainPtFightBack

11/And someone will say "why can't you do this faster because there are patients at risk right NOW!"

This is part of why I mentioned I started on an advocacy path in 2017.
I'm not someone to delay speaking up for human life because the "best possible study" isn't yet complete

12/But also, on the issue of time, there is a REASON no one else has tried to do what we are doing.
To do it right, to not mishandle our responsibility, requires an innovative plan, with extensive protections that meet appropriate, rigorous ethical and regulatory requirements

13/If there is someone out there who mistakenly thought my middle name was "speedy", *no*.
I see details that, if not managed correctly, will cause harm.
I am lucky to have a team of hard working collaborators who will help us continue to move this forward
Follow CSI OPIOIDs /fin

update may be of interested to @afspnational @AllysonVarley @AJ_Gordon @vahsrd @tylerblack32 @national_pain @tal7291 @LelenaPeacock @TAPSorg @cappi_uab @EliseDasinger and many more we hope