4 May, 11 | by Leslie Goode, Blogmaster
Last month saw the publication by the US Institute of Medicine (IOM) of a report commissioned by the National Institute of Health (NIH): The Health of Lesbian, Gay, Bisexual and Transgender (LGBT) People: Building a Foundation for Better Understanding. The report is a systematic review on the existing literature on all aspects of LGBT health, concluding with a number of recommendations. These include: the development of a research agenda by NIH; the collection of data both by federally funded surveys and in electronic health records; the promotion of methodological research and research training. The collection of LGBT data is clearly a central concern here, and evidently arises out of the gaps identified in the systematic review. Other recommendations are upstream of this, leading us to surmise that the precise data to be collected and means of collection – even standardization of LGBT critera – remain to be determined.
It is an easy matter for a systematic review to give the impression that there is research still needing to be done. The reader may find themselves asking why the populations in question, especially when they are very small, should be accorded a higher or lower priority that other populations known to the reader (e.g. occupational or disability groups), especially where the latter have health needs which seem just as distinctive in their way and just as pressing as those of LGBT populations. The report makes no attempt to justify the preferential focus on populations distinguished by sexual orientation.
On the positive side, the review chapters of the report, which follow health status over life course, bring home the very distinctive health profile of each of the LGBT populations. They also show up gaps in the data for important areas of concern. For instance, no data for sexual orientation are collected by the National Cancer Institute. Consequently, the question of the susceptibility of the Lesbian population to breast cancer remains unresolved; similarly, the known risk of anal cancer for the gay population remains inadequately assessed, and there are no current guidelines for screening. In other areas relevant to LGBT well-being, such as access to reproductive technology, such data would presumably be impossible to collect, since the American Society for Reproductive Medicine explicitly states that requests should be treated without regard to sexual orientation.
This leads me to a final point. Of the recommendations made by the authors, the collection of data on sexual orientation in electronic health records could prove the most challenging to implement. The authors themselves remark on “the discomfort on the part of health care workers with asking questions about sexual orientation and gender identity, a lack of knowledge by providers of how to elicit this information, and some hesitancy on the part of patients to disclose this information”. Such discomfort and hesitancy may be rooted in considerations that go deeper than just a concern with “adequate privacy and security protection”.