Being a Smart Patient and Healthcare Consumer

Thomas Lawrence Long, Christine Rodriguez, Marianne Snyder, & Ryan Watson

As we have noted throughout this chapter, LGBTQ individuals encounter disproportionate discrimination in healthcare compared to the heterosexual population. While there is some evidence to support that negative experiences are improving for some LGBTQ persons, discrimination continues (Dorsen, 2012). Lack of healthcare provider education in culturally inclusive LGBTQ communication and care is frequently noted as a contributing factor for health professionals’ discrimination (Eckstrand & Ehrenfeld, 2016; Eliason & Chinn, 2018; Landry, 2017; Keuroghlin, Ard & Makadon, 2017; Lim, Brown, & Kim, 2014; Joint Commission, 2011). The shortage of educated practitioners and practitioner bias have caused many LGBTQ persons to either delay or avoid seeking health care services. A primary reason attributed for this delay or avoidance is that LGBTQ individuals often feel invisible to their providers and have experienced discrimination in previous encounters (Carabez et al., 2015; Eckstrand & Ehrenfeld, 2016; Eliason & Chinn, 2018).

Although the deficiencies in healthcare professional education may largely contribute to the negative healthcare experiences of LGBTQ individuals, other factors also contribute. A provider whose value system, religious beliefs, and political party affiliation are hostile to LGBTQ people may have difficulty providing respectful and affirming care to LGBTQ persons.  Despite these factors, LGBTQ persons are entitled to respectful and culturally inclusive, patient-centered care from their providers. Therefore, it is equally essential for LGBTQ people to be informed healthcare consumers, practice self-advocacy and shop wisely for LGBTQ affirming providers. Self-advocacy is an essential attribute to optimize access to LGBTQ affirming quality health services and may help to mitigate future encounters with discriminating healthcare services.

Healthcare Providers

Healthcare provider education programs are inconsistent in teaching medical and nursing students about health issues unique to the LGBTQ population and individuals. An emerging body of research advocates for more education to better meet the needs of LGBTQ patients (Eliason, Dibble & DeJoseph, 2010; Lim, Johnson & Eliason, 2015). For example, in one study American medical schools were found to provide only an average of 5 hours of LGBTQ education throughout the curriculum (Obedin-Maliver et al., 2011). In comparison, baccalaureate nursing programs in another study only spent an average of 2.12 hours teaching content about LGBT health topics, and less is known about the extent to which other health provider education programs cover this content (Lim, Johnson, & Eliason, 2015).  During a health care clinical experience, LGBTQ individuals often encounter health care providers who lack a basic understanding of LGBTQ cultures, terminology and culturally inclusive care (Landry, 2017).

Locating an LGBTQ affirming healthcare facility can be difficult but not impossible. Many affirming national organizations provide resources for LGBTQ persons and healthcare providers. For example, the Human Rights Campaign (HRC), the largest national LGBTQ civil rights organization with over 3 million members, has a benchmarking tool, the Healthcare Equality Index (HEI) to recognize health care facilities with policies and procedures for equity and inclusion of LGBTQ patients, visitors, and employees (HRC, 2019). Current HEI designated healthcare facilities are available in the Human Rights Campaign HEI Directory (HRC, 2019). An agency must reapply for the HEI leader status yearly to demonstrate that they meet the current standards outlined by HRC.

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Another organization, GLMA Health Professionals Advancing LGBTQ Equality (2019) has an extensive Directory of LGBTQ affirming healthcare providers across the United States (GLMA, 2019).  The GLMA (2006) Guidelines for Care of LGBT Patients offers recommendations for practitioners to consider when caring for LGBTQ clients. The National LGBT Health Education Center, a program of the Fenway Institute (2015, 2016), also has excellent resources to help educate providers.  Both of these organizations provide valuable resources and are worth mentioning to a provider who lacks sufficient knowledge to provide culturally inclusive care for LGBTQ persons. Additional organizations and coalitions that support LGBTQ health are listed in Table 3. All of these organizations provide free publications and resources for the LGBTQ person and healthcare providers.

Informed Healthcare Consumers

When navigating a system where not all providers understand or practice LGBTQ inclusive care, LGBTQ individuals need to know what questions to ask when visiting their provider. While it is important to be true to yourself and disclose your sexual identity to your provider so you can receive the most holistic care possible, not all LGBTQ persons feel comfortable disclosing this information, particularly to a new healthcare provider with whom they have not yet established a trusting relationship. The Institute of Medicine (2013) has recommended including sexual orientation and gender identity data in electronic health records so that more healthcare facilities will ask patients for this information. Ultimately, however, each LGBTQ person must decide when it is most comfortable for them to disclose.

Before visiting a provider, consider calling their office to ask if they provide inclusive care for LGBTQ patients. Bring a friend or partner to the visit for support if you are uncomfortable meeting with the healthcare provider. Healthcare providers must adhere to laws, policies and ethical codes to keep your information private. Although a healthcare provider may ask about sexual orientation and gender identity, LGBTQ persons also have the right to request that the provider not enter their sexual orientation and gender identity into the medical record.

Paying Attention to Special Health Issues

It is essential to understand healthcare issues more common in the LGBTQ population and explore if they have any of these risk factors. GLMA- Health Professionals Advancing LGBTQ Equality organization has created resource sheets for LGBT persons, and each one addresses top health concerns to discuss with their healthcare provider. While not all of these health issues apply to every person, it is essential to be aware that these 10 ten health topics are more common among LGBTQ people.  There are several health topics relevant to all LGBTQ groups and others that pertain more to one group. For example, research has identified that depression, tobacco and alcohol use, sexually transmitted diseases (including HPV, HIV/AIDS) and certain cancers are greater health risks in the LGBTQ population (IOM, 2011; CDC, 2016). Moreover, the risk of illicit use of injectable silicone is a more significant concern among transgender women (Bertin et al., 2019). Other health issues are more common within certain groups such as breast and gynecological cancers among lesbians and male-to-female transgender persons (IOM, 2011; CDC, 2016).  In addition to the risk of HIV/AIDs among men who have sex with men, there is also have a higher incidence and mortality from prostate, anal and colon cancer (Boehmer, Ozonoff, & Xiaopeng, 2011).

Actions taken to minimize risk factors for these acute and chronic illnesses are essential to maintaining a healthy life. The LGBT Health Link is a network for health equity and offers very practical advice for things that LGBTQ people can do to improve their wellness. Some of the recommendations include how to search for insurance options, practice preventive care, seek mental health support, adopt a healthier lifestyle, and practice safer sex (Buchting et al., 2015).

The resources provided in this section support the LGBTQ individual to advocate for themselves when seeking healthcare services, particularly from providers who are not well educated about LGBT health issues or who do not demonstrate culturally inclusive and affirming behaviors. Although healthcare providers are responsible for establishing a trusting relationship with the patient, this does not consistently occur in every healthcare setting. When a healthcare provider demonstrates genuine concern and respect for the LGBTQ individual in a practice not restricted to a 15-minute office visit, then there is greater opportunity for individualized, holistic, patient-centered care.

Table 4. LGBTQ Education and Advocacy Organizations

Organization URL
GLMA Health Professionals Advancing LGBTQ Equality
The Association of Lesbian, Gay, Bisexual, Transgender Addiction Professionals and Their Allies
The World Professional Association for Transgender Health (WPATH)
Center of Excellence for Transgender Health
The National LGBT Cancer Network
The Trevor Project
The Community of LGBT Centers
Fenway Institute
Howard Brown Health
Los Angeles LGBT Center
The Mazzoni Center LGBTQ Health and Well-Being
LGBT Health Link–ten-things-know_june2017.pdf

Becoming a smarter LGBTQ health consumer requires being aware of the community’s complex history with medicine, understanding the unique health issues involved, and recognizing health risks and changes that occur over the course of life.