We have received many responses from chronic pain patients, providers and friends who wondered why we, at the National Pain Report, are promoting a chronic pain patient survey so much.
One reason is simple: this is the largest sample of chronic pain patients and providers in history. Over 4000 people have already filled out the survey—and we are hoping we can reach 5000 before the end of March. (So please send this to your own networks, post it on Facebook. We need the data.)
The other answer is even more basic: we want to make a difference.
You will note the original survey was designed to create some data for the FDA…but it has become much more than that.
Now, it’s about getting the voice of the chronic pain patient motivated and heard with federal policy makers, providers, .
If you are wondering what Dr. Terri Lewis, who is a passionate defender of the rights of the chronic pain community, is going to do w/ this data—this is what she told a National Pain Report reader this weekend:
The survey responses are being analyzed and prepared for a number of potential issues and policy audiences. Results will be summarized and prepared in a variety of formats to inform state and federal policy makers across public agencies. I am mapping the data by zip code and publishing drafts on these as maps on my twitter feed @tal7291.
To start I am assembling categorizing feedback on diagnoses, symptoms, pain characterizations; all the things your report that you have tried (worked, didn’t work); barriers to care; pharmacy experiences; insurance issues; treatment experience; step therapy; and suicide. I encourage parents, care partners, spouses and family members in any role; folks in the helping profession to respond.
This project falls into the category of patient-generated research; 80% of you have indicated that you would like to be invited into future research opportunities. People with chronic pain are usually left out of research activities – so I am preparing to place a new project (derived from this one) under an IRB (Institutional Review Board) so that we can really get a deeper dive in your experiences and impact more targeted policy audiences.
I am forever grateful to have your trust as we move this into the public space. If you are involved in regular advocacy and you want information about ongoing survey results for your state, please email me at firstname.lastname@example.org. I will de-identify and provide you with a state snapshot.
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