Largest study of transgender person health funded by PCORI

Comparative Risks and Benefits of Gender Reassignment Therapies | Patient-Centered Outcomes Research Institute.

There are so many questions, some based on curiosity, some based on bias, some based on prejudice, about the provision of care for people who are transgender.

The result of these questions is that people who need medically necessary care don’t get it, often with devastating results. In fact, it can be argued that not providing this care is actually more costly to health care and to society than providing it. (see: Why I’m going to Capital TransPride this weekend | Ted Eytan, MD for a run down)

That’s why I am excited to read that this $2+ million study has been funded by the Patient Centered Outcomes Research Institute (@PCORI).

And … Kaiser Permanente Northern California, Southern California, and Georgia are going to be involved in the study, along with the Veterans Administration.

At the Center for Total Health (@kptotalhealth) we often talk about how the experience of our members over the past 70 years has helped medicine understand the best ways to care for people. This study comes from a place where we want to know how to help people who are trans be healthy, and that makes me happy :). Take a look:

This project is an electronic medical record based study evaluating a group of 6,500 transgender individuals, whose care is covered by the Veterans Administration (nationally) or by Kaiser Permanente (in Georgia and in Northern and Southern California). In this study, we will compare frequencies of various diseases and deaths from various causes in transgender persons and separately in those who request female-to-male and male-to-female sex change to similar measures in a sample of men and women who are not transgender and are of the same age and race. We will also compare health problems by treatment categories (e.g., no medical treatment, versus treatment with hormones only, versus hormones plus surgery). The proposed project will be carried out by a team that includes experts in chronic and infectious diseases, mental disorders, and sexual minority health issues. All of the project activities will be implemented in consultation with the study advisors who will serve as advocates for the transgender community. This will likely be the largest study of transgender persons available to date, and the first study of its kind conducted in the United States.

One more thing – although this study is going to produce valuable data, it is not going to change the determination made by the major medical professional organizations that not providing it is discrimination (see link above).

Sara Hurley – Studying the It Gets Better Project

About Me « Sara Hurley. – I think this is worth a post because it’s an innovative and humane way to recruit people for a research study, very much in the spirit of social media.

I received a solicitation to take a survey for potential inclusion in the study on the YouTube channel attached to my It Gets Better video. I then clicked through to Sara’s page to find a video about her, the work, how it works, and why she’s doing it.

In a world where most study recruitment can seem impersonal and clinical I think this is a great approach. What if every researcher shared their passion about the work with their potential subjects in advance ? Or is this state of the art somewhere already?

I don’t know if I’ll be selected to participate , but I did take the survey, and you can too, if you are 18 or older, in the LGBTQ spectrum, and participated in a video for the It Gets Better Project.

I continue to be amazed by the conversation that the video I made is creating; those who come without love for people who are different then them are bringing it in an open forum that they do not control. And they are now in the minority. What a change from the days when the minority had no voice, and how important that people who are scared about their future can see this and feel less so.

I’m glad this phenomenon is being studied and I look forward to the results.

 

LEAN Hospital and Public Comments; The Unconference Concept; The State of Agile (LEAN Software Development)

March 14th through March 17th:

Secret Life of a Blog Post; Progress of the Naitonal HIT Initiative Poor; Washington Community Quality Checkup

February 1st through February 2nd:

White Paper – Patient-Centered Applications, Forrester on Health Plans and PHRs

PCHIT links for December 26th through December 27th:

Patient-Physician E-mail: An Opportunity to Transform Pediatric Health Care Delivery

Patient-Physician E-mail: An Opportunity to Transform Pediatric Health Care Delivery — Rosen and Kwoh 120 (4): 701 — Pediatrics

Josh Seidman alerted me to this recently published study of the use of patient-physician e-mail in a smaller pediatric rheumatology practice. The study shows that the state of the art for many practices like this is still unencrypted e-mail as was used in this case. At the same time, the authors did a nice job quantifying time spent communicating this way as well as the impact on patient satisfaction. Of significance, they found that e-mail responses took physicians 57% less time on average to complete.

The article adds to the body of knowledge that this is a good thing to do. Of course, I might ask if in the future we should quantify the time savings to patients in addition to / instead of to physicians. The other curiosity I had after reading the article was the statement repeated multiple times throughout that “pediatricians are leaders when it comes to using patient-physician e-mail.” I didn’t see any data to support this. Maybe this is a bit of cheerleading to enhance adoption in the pediatrician community? At this point in our work, I can imagine that it is important to describe differences in various specialties’ use of patient centered health information technology, but not sure of the importance of singling out any specific specialty as the “leader.” Open to any comments to the contrary….