The diagnosis o cancer is the beginning o a righteningand stressul period in anyone’s lie. The newly-diagnosedpatient is suddenly embroiled in a calculus o medicaldecisions. As cancer treatment is pursued, they might seemore health providers in a week than many riends will seein a decade. The extreme health event o a cancer diagnosesquickly molds average people into experts in the strengthsand weaknesses o the healthcare system.For many LGBT people, the critical questions about treatmentoptions and recovery are ollowed immediately by concernsabout social stigma. The all-important question o “Will I behealthy?” is compounded by an additional slew o worries.New questions such as “Should I come out to my doctor?”“Will I be sae i I do?” “Will my chosen amily be welcome?”and “Will I be oered the inormation I need to know to takecare o my relationship, my sexuality, my ertility, and myamily?” are thrust into the oreront.An increasing body o research suggests that these questionsare related to health outcomes. Patient assessments o the
o their own healthcare are more predictive o healthoutcomes than provider ratings. Importantly, those that arethe most satised with their healthcare tend to
healthier.These ndings have led to a new movement in healthcare,moving rom “what’s the matter” with patients to “whatmatters” to patients.
We describe this approach as “patient-centered care.”Shiting to patient-centered care represents not onlyhealthier people but also a large potential cost savings to ourhealthcare system. As a result, there is a large investmentinto researching “what matters” to patients. In 2013, anestimated $320 million o new unding will be dedicated toresearching how to improve patient-centered outcomes in theU.S.
Despite a long history o documenting LGBT healthdisparities, little is known about “what matters” to thiscommunity with regard to healthcare. Like many others,members o the LGBT community oten think o the healthsystem in the old model, where
is solely dened
good medical decisions
. In the new patient-centered caremodel, how patients
about medical decisions as well as aperception o
equitable treatment by providers
blends togetherto create the best possible health outcomes. Exploring theactors in this larger model might help explain the history oworse health outcomes experienced by the LGBT community.LGBT cancer survivors are one such population that reportspoorer health outcomes than their non-LGBT counterparts.
This act, combined with the intense interactions cancersurvivors have with the healthcare system, makes exploringthe insights o these survivors particularly ertile ground toadvance both patient-centered care as well as LGBT health.In the ollowing pages we present the responses o asurvey o 311 LGBT cancer survivors as they describe whatthey would want healthcare providers to know about theirexperiences. Some o their stories show great strengths inour healthcare system. Some expose weaknesses. Takenas a whole, their words provide us with a roadmap o howto improve LGBT patient-centered outcomes. Not just orcancer care, but across all health disciplines.We wish to thank all o the survivors who had the courage tospeak up honestly about their experiences. By the very natureo this study, it is likely some o the voices on the pages thatollow have now been silenced. Let us honor those lives byusing all the lessons here to build lasting change.
liz margolies, lcsw
executive director, national lgbt cancer network
director, network for lgbt health equityat the fenway institute
1. http://healthaairs.org/blog/2012/01/24/patient-centered-care-what-it-means-and-how-to-get-there/2. http://www.pcori.org/how-were-unded/3. Boehmer, U., Miao, X. and Ozono, A. (2011), Cancer survivorship and sexual orientation.
117: 3796–3804. doi: 10.1002/cncr.259504. Hart, S., Coon, D., Kowalkowski, M., & Latini, D. (2011). 163 Gay Men with Prostate Cancer Report Signicantly Worse HRQOL Than Heterosexual Men.
The Journal of Urology
. 185(4), e68-e695. Kleinmann, N. et al. Nat. Rev. Urol. 9, 258–265 (2012); published online 10 April 2012; doi:10.1038/nrurol.2012.56