Monday, May 1, 2023

Letter to Boston University Asking for Co-Empowered Peer Inclusion in Public Health Research and Support Efforts

Email first sent on Tuesday, May 2nd to the leadership team at the newly announced Center for Trauma and Mental Health at Boston University's School of Public Health. Despite numerous attempts to reach out, still no reply from any member of BU faculty or leadership.

You can help by emailing Dean Sandro Galea and Associate Dean Yvette Cozier (and other BU faculty and staff). Don't let patient feedback be silenced, ignored, and tokenized!

Dean Galea:

Associate Dean Cozier:

(please cc to help with advocacy organizing)

Letter to BUSPH Leadership


This is Max Taylor from the Peer Voices Network, writing once again to leadership at Boston University's School of Public Health (SPH), to ask and insist that broader measures be taken to incorporate and invest in peer perspective input as co-equals in health design and health research efforts.

Today's email is in response to the announcement of the new mental health center at Boston University: SPH Launches Center for Trauma and Mental Health

A stated goal of the center is that "equity and justice will serve as guiding principles for the center, which will emphasize community engagement in all aspects of its work". Given that goal, included below is a peer empowerment roadmap that my community cohort believes to be equitable and just requests. Please read the full letter below. 

Please respond and engage meaningfully. My peer community deserves to not be ignored on this matter. We are the community you have stated that you want to engage with. 

Included below is a letter introducing the Road Map to Empowered Peer Inclusion. This is how the peer community I represent would like to be engaged with.

Also included is a short section referencing a December 2022 peer inclusion report from the National Institutes of Health Working Group on Diversity. Members of that working group are among those who have been cc'ed on this email. Their work and report is directly relevant to the requests contained in this email. 

Thank you for reading, and am looking forward to a reply from BUSPH leadership. 

- Max Taylor

Introducing the Road Map to Empowered Peer Inclusion 

Direct Action Request: Please respond with an action plan (with accountable deadlines) on this matter.

There is a crisis of non-inclusion of empowered peer voice in health services and research in this country. I have documented evidence of, quite literally, thousands of cases of client non-improvement (and often further deterioration) in response to years and decades of attempts of mental health care on their behalf. This evidence is not making it into research cycles. It often isn't even considered evidence. This is not science. This is prejudice against peer feedback.

Boston University has the resources to be a leader in implementing what science and DEI efforts should be, are currently often is not - using and respecting all available evidence. Letting service users themselves say what help is and is not. Letting service users have an authoritative and empowered say in what does and does not count as evidence.

Boston University has publicly and repeatedly stated interest in such endeavors since last fall. They are also currently falling short of where the peer community would like them to be. My extensive peer network cohort is working to develop a roadmap of empowered inclusion and it will call for...

Draft Road Map to Empowered Peer Inclusion
•  Funding of community, advocate, peer-led, peer-designed projects
•  Moving past tokenized inclusion and into genuine empowered co-participant research design power structures for peer perspectives
•  Bringing peers on as co-equal research partners 
•  Paying fair and equitable wages for peer labor on improving health systems and health knowledge

Please do not ignore these community requests. This request deserves a respectful and engaged response. These peer feedback critiques deserve respect, acknowledgement, and engagement. My community deserves action being taken right now. Not next funding cycle. Not next year. Right now, within basic common sense expectations, as soon as possible. 

This is not an unreasonable ask. And I would challenge everyone at Boston University reading this to consider what it means, on a basic moral level, to keep excluding peer advocate voice from health service research and design. We can do better. We must do better. Doing so will result in better health outcomes for the people you state (and I believe truly do) care about. We want care that is decided, in large part, on our own terms. That is a reasonable request. 

Please respond with an action plan on this matter.

Connection to Recent National Institutes of Health (NIH) Report

The new BUSPH Center for Trauma and Mental Health will be lead by Dr. Jaimie Gradus, a current NIH funding recipient.

I thus have added every member of the NIH Working Group on Disability to this email. Their team released the following Dec 2022 report: NIH advances landmark recommendations on disability inclusion and anti-ableism

Mental illness is a disability, and falls under the purview of that report. Many of the roadmap asks above fall directly in line with these report recommendations. Will Boston University follow these recommendations? Is that working group yet another well-meaning effort with no real accountability or meaningful resultant change? Or can it be something more?

This is a chance for BUSPH to be that change. 

Report recommendations include...

•  Ensuring that including people with disabilities and anti-ableism are core components of all NIH diversity, equity, inclusion, and accessibility efforts

•  Expanding efforts to include disability communities and the perspectives of individuals with disabilities in NIH efforts and help inform NIH’s approaches with these perspectives

•  Establishing structures of accountability around these efforts to promote progress and transparency

•  Coordinate research activities involving people with disabilities and to support disability inclusion within the scientific workforce

* * *

This letter was designed and written by the Peer Voices Network. 

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