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December 30, 2016 FYI Letter to Jagruti Patel, Daniel Eisenberg, et al. of MIT & U. Mich.

Below is the December 30, 2016 letter, without enclosures. For the full PDF of what was actually sent (81 pages) including enclosures, click here
December 30, 2016

John K. Hinsdale
38 Quaker Road
Princeton Junction, NJ
USA 08550-1650
Email: hin@alma.com
Day Tel: +1 609-638-1713
TO:
Jagruti Patel
Director, Special Projects, MIT
77 Massachusetts Ave.
Building 10-205
Cambridge, MA 02139
By Certified Mail
No. 7015-0640-0001-8787-3308
Daniel Eisenberg
Assoc. Prof. of Health Management and Policy
1415 Washington Heights, SPH II
University of Michigan
Ann Arbor, MI 48109
By Certified Mail
No. 7015-0640-0001-8787-3315
Maria T. Zuber
Vice President, Research, MIT
77 Massachusetts Ave.
Building 54-518
Cambridge, MA 02139
By Certified Mail
No. 7015-0640-0001-8787-3322
Martin A. Schmidt
Office of the Provost, MIT
77 Massachusetts Ave.
Building 3-208
Cambridge, MA 02139
By Certified Mail
No. 7015-0640-0001-8787-3339
Cynthia Barnhart
Office of the Chancellor, MIT
77 Massachusetts Ave.
Building 10-200
Cambridge, MA 02139
By Certified Mail
No. 7015-0640-0001-8787-3346
L. Rafael Reif
Office of the President, MIT
77 Massachusetts Ave.
Building 3-208
Cambridge, MA 02139
By Certified Mail
No. 7015-0640-0001-8787-3353
James A. Ashton-Miller
Assoc. VP, Research Policy and Compliance
4080 Fleming Building
University of Michigan
Ann Arbor, MI 48109
By Certified Mail
No. 7015-0640-0001-8787-3360
INFORMATION RELATING TO SPRING, 2015 HEALTHY MINDS STUDY AT MIT

Dear Researchers and Officials,

I write as a citizen interested in the integrity (and appearance thereof) of mental health research conducted at Massachusetts Institute of Technology (MIT) and University of Michigan (U-M). My interest is to the extent that:

Following is information relating to the Healthy Minds Study (HMS) as conducted at MIT in 2015. It is submitted in the hope that you may find it useful.

Healthy Minds Study at MIT, 2015 — Promises of Anonymity

MIT Promises of Anonymity

In the Spring of 2015, MIT recruited and U-M and its agents administered the HMS, a survey which asks about mental health issues, as well as medical issues such as diagnoses and treatments (e.g. prescriptions), and many other highly personal topics. Recruitment was from the entire MIT student body of over ten thousand. In a FAQ document, posted on MIT's web sites from at least April, 2015 [1] through May, 2016 [2], and apparently since removed, anonymity of survey responses, at least as far as MIT's use of the data, was promised to respondents: "MIT Institutional Research will receive de-identified survey responses for analysis; MIT will not have access to the survey responses with identifiers." [1] [2]

U-M Promises of Anonymity

Over the last five months, officials at NIH have worked to provide what should be complete documentation on confidentiality assurances made by U-M as the lead site for the HMS. [3] For the 2015 HMS, legal protections authorized by NIH appear to be provided by the original Certificate of Confidentiality (CoC), applied for by U-M on September 30, 2005, issued January 8, 2006, and extended three times through Spring of 2015: on September 25, 2007, February 24, 2010 and March 15, 2013, the last extension to remain effective through end of 2017 and covering the Spring 2015 HMS.

Customary assurances were given in the original CoC application—which remained identical for the three extensions—by U-M's Daniel Eisenberg and Judith A. Nowack. As Nowack had retired at end of 2012, and no new Institutional Official was submitted with the March 2013 application for extension (the last extension prior to Spring 2015), the CoC was apparently without a visible responsible Institutional Official on record in Spring, 2015.

In the original September 30, 2005 CoC application's assurances, the most recent in place in Spring 2015, Eisenberg and Nowack promised, in section Q9, "Protection of subjects' identities," that "... in the final analytic data file, no identifiable information will be included." [3]

It would thus appear that for the HMS final survey data, U-M promised not transmit, and MIT promised not to receive, any data that could be tied to individual respondents.

Appearance of Use of Identified Survey Data Contrary to Promises of Anonymity

In June, 2016, widely disseminated statements were made by MIT, on a specific-subpopulation basis, whose only visible factual basis would appear to have been the 2015 HMS survey, analyzed in a way that would require identified responses correlated with out-of-survey data available only at MIT. Enclosed is a letter [4] on that topic, from approximately 200 concerned citizens, many from the MIT community. Please note that its signers have attached their signature only to that letter and nothing else herein. Thus the letter [4] should be treated as cited by but not incorporated into this letter—that is, as essentially a separate communication from this one.

Such use of personally identified (or indirectly identifiable) data, if true, would appear to have numerous implications, e.g., among others:

Again, this letter is to supply information in the hope that it may be useful, and, separate from the enclosure [4], is not to be treated as any kind of complaint or any other request for action. Thank you in advance for your time and consideration.

Sincerely,






John K. Hinsdale

Enclosures (4):
[1] MIT Healthy Minds FAQ, archived April 25, 2015 (1 page)
[2] MIT Healthy Minds FAQ, archived May 11, 2016 (1 page)
[3] Request to and response from NIH for confidentiality documents relating to HMS (54 pages)
[4] Letter from approx. 200 individuals concerning survey confidentiality and use of data (15 pages)