1/ First #EricTopol @scrippsresearch #ScrippsInstitute blocks me for questioning research he shared - what I'd call an "AI"-hype commentary by Kaiser Permanente docs. Then my post gets "liked" by SynthMind AI, an "AI"-hype account that claims to be able to find clients for me.

https://twitter.com/holdspacefree/status/1755241806193897482

2/ Here's the paper () and image of the post I was commenting on. Feel free to make your own conclusions about ambient "AI"-assist medical note scribes. catalyst.nejm.org/doi/full/10.10…

1/ If anything here is wrong, please correct me.
Not ideal to weigh in during the linked call for research, but this is a pattern of concern to me. With my limited reach, I'm appealing to those closest, please reconsider these partnership approaches.

https://twitter.com/fitzsimmonscraf/status/1734337531116745031

2/ In 5 min I traced out the industry connections to this eating disorder/wellness study, most people would never see them or understand that de-identified information is shared, with little, or at the very least unclear limits, in the use of the children’s words/actions as data.

1/ Let’s talk about @988Lifeline's new Videophone service for callers who are Deaf or with Hearing Loss.
We can CELEBRATE this inclusion,
AND we can demand better from #988Lifeline.
@DeafLEAD @NAD1880 @SAMHSAgov @VibrantForAll

https://twitter.com/samhsagov/status/1700188501289935311

2/ Please offer corrections with receipts if any of my facts are incorrect.
#VibrantEmotionalHealth, a private corporation, is #SAMHSA’s 988 Lifeline contracted administrator “grantee”. The 988 Videophone service apparently belongs to them.*
988lifeline.org/help-yourself/…

1/ If you're a researcher in the field of mental health, & you note an abysmal lack of resources for care, in particular for children & young people(CYP), wouldn't you want to direct your research towards securing funding & support?(stay tuned for ans) 1st, the lack of resources: "In England, mental health services for CYP are historically underfunded, seeing service cuts of up to 75% even as demand increases at a rate of approximately 11% per annum [12]. One core issue of access, which inhibits the expansion of service provision, is the scarcity of.."

Data Harvest-also see @schock's quote tweets:
☹️Kantar...Use Any Rx Treatment for Depression
☹️Skydeo ... Caregivers by Disease Propensity Type > Depression Propensity Caregivers
😧Health & Fitness::Panic/Anxiety Disorders - comScore (audience interest)

https://twitter.com/schock/status/1667159894724673547

🫤mi9_gs_mental_illness (Grapeshot)
🫤b2bnet_latuda_mentalhealth (Grapeshot)
🫤adready_cenikor_mentalhealth (Grapeshot)
🫤xaxisus_headspace_mentalhealth (Grapeshot)
🫤sublimeskinzltd_pr_singtel_mentalhealth (Grapeshot)

@samhsagov and @vibrantforall are you aware that your top-recommended online therapy resource @betterhelp was just fined $7.8M by the @FTC? @BrendanCarrFCC Here's #988Lifeline's resources page linking to top 10 online services, page earns commissions (!) 988lifeline.org/help-yourself/ 2/ Click on Online Therapy gets to this link: onlinetherapy.com/best-online-th…
"We may receive commission if you decide to use counseling services through BetterHelp or other resources on our website." Persons needing help deserve an unbiased un-capitalized source for vetted resources.

1/Behavioral Health Link develops & markets #CrisisLines services to #988Lifeline providers. One of their offerings: "Voice-Currently in R&D, voice analysis technology to provide real time feedback on a caller’s emotional state to improve care delivery."web.archive.org/web/2022120220… 2/I've started mentioning Dr. John Draper's connection there, recently hired as their President of R & D. You may recall Draper was the long-time leader of Vibrant Emotional Health's administration of the Nat'l Suicide Prevention Lifeline,now #988Lifeline. linkedin.com/in/john-draper…

Disheartening how little regard there is for consent in the medical-health-data community. For example this new study looking into suicide "prediction". This is a #BigProblem #MentalHealth #BioInformatics #DigitalPhenotyping #Suicidology #DataEthics nature.com/articles/s4174… 2/ In this study, with MASSIVE personal health datasets provided by Kaiser Permanente @kpthrive, HealthPartners @_HealthPartners , Henry Ford Health System @HenryFordHealth the researchers applied models (including "neural" network) to try to predict suicidal risk.

RE: Finding one's moral compass
If I'm Nancy Lublin just fired from a job for racist behavior, and creating & allowing a toxic work environment, how do I justify, how do I feel taking $607,000 on my way out?
Take from a crisis service org "non-profit" that runs on donations? 2/And how they slow roll the disclosure of $607k settlement amount until the 2021 financials, released in fall 2022. No announcement anywhere. Lublin was fired June 2020.

On Oct 13 I asked Crisis Text Line whether it disbanded its "Data, Ethics, & Research Advisory Board" and its "Clinical Advisory Board"(no longer listed on website). They acknowledged receipt, they try to respond in 48 hrs. No answer. Follow-up sent today. crisistextline.org/about-us/board… 2/ Shortly after the POLITICO article that exposed Loris, they took down the names of the advisors. My guess is that these advisory boards were only briefly active & more show than substance. Need to hear more from the advisory board members for accountability at top.

1/4 I will pay $500 USD to the first person, by Aug 5,2022, to provide me with a peer-reviewed journal-published academic research paper that claims Terms of Service agreement as adequate informed consent for research on crisis conversations in USA. My “Terms and Conditions”: ... 2/4 It can’t be this 2019 JMIR paper (the only one I could find, making the claim for #CrisisTextLine), or any paper that cites to it. Must be research on the crisis conversations themselves—phone, text, transcripts, words. ncbi.nlm.nih.gov/pmc/articles/P…

1/12 I’m calling on #CrisisTextLine to stop allowing anonymous donations. It was shared with me that 2020 financials were recently posted. In 2020, there were massive donations—securities donations totaling $30.4M plus several cash at $1M. All appear anonymous. 2/12 Due to the orgs ethical failures related to data, the public needs to know who is behind the money, especially if the $ has data affiliations. It’s time to end the anonymous donor policy.
crisistextline.org/donor-confiden…