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Should doctors disclose their demographic information? It's complicated.


Colorado recently launched an initiative asking insurers that offer certain health plans to collect demographic information from providers and enrollees—a move that some health care workers say could threaten their safety, Markian Hawryluk reports for Kaiser Health News.

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Colorado asks insurers to collect demographic information

Under the new law, which is set to take effect later this year, health insurers will be required to offer the "Colorado Option," a state-run Affordable Care Act marketplace plan that offers standardized benefits. The state will require those plans to create "culturally responsive provider networks" that offer "a diverse set of health practitioners who can meet the needs of a diverse population," Hawryluk writes.

According to state officials, the "Colorado Option" will be the first health plan in the country specifically designed to further health equity. It will include improved coverage for services that combat health disparities. In addition, all providers, staff members, and customer service representatives will be required to undergo anti-bias training, and plans will be required to boost the number of community health centers and certified nurse-midwives in their networks.

The health plan directories will also be required to list the languages spoken by providers and their office staff, specify whether they are accessible for those with disabilities, and disclose whether the provider offers evening or weekend hours.

Ultimately, state officials and consumer advocates anticipate that the demographic data will help patients make more informed decisions when selecting a provider. Further, the state plans to use the data to narrow any gaps between patient and provider diversity.

"Nobody knows how many particular racial or ethnic identities they might have among their providers, what the percentages are, and how they correspond with the communities that they serve," said Kyle Brown, Colorado's deputy commissioner for affordability programs. "Traditionally, data like this isn't collected."

Previously, the state considered including demographic data in directories patients could use to choose their doctors, but it decided to make the reporting of demographic data voluntary and confidential after physician groups voiced privacy concerns. "That means insurers must ask, but the providers can decline to answer," Hawryluk writes. "And the data collected will be reported to the state only in aggregate."

Health care professionals voice privacy, safety concerns

While research suggests that patients often have better outcomes when they see health providers with similar backgrounds, some health care professionals have voiced concern that the initiative could ultimately pose a threat to their safety and privacy.

In particular, physician groups and other stakeholders worry that publishing public demographic data could subject some providers to harm, especially those in the LGBTQ+ community.

"There are a lot of really conservative parts of Colorado," said Steven Haden, a mental health therapist and CEO of Envision:You, a nonprofit that focuses on LGBTQ+ behavioral health services. "In lots of communities outside of our metropolitan areas, it's not safe to be out."

As a result of these concerns, state officials are trying to determine how to use demographic data to help patients select practitioners who have similar backgrounds while avoiding unintended negative consequences, especially those surrounding sexual orientation and gender identity.

According to Mark Johnson, president of the Colorado Medical Society, more doctors than ever now feel comfortable disclosing their sexual orientation and gender identity. However, there are still incidents in which disgruntled patients lash out because of a physician's personal characteristics.

"Even though we're a purple state, there's still a lot of bias here and there," Johnson said. "There could be some real problems that come out of this, so I am hoping they will be very, very sensitive to what they're doing."

Despite these concerns, however, "Colorado's approach has caught the eyes of other states," Hawryluk writes.

Notably, CMS recently announced it would increase its collection of demographic data across all programs—which cover around 150 million people—as part of a new federal health equity initiative.

"We have learned from bits and pieces of what other states have been doing and what the national leading experts have been talking about in terms of health equity and cultural competence, and we have synthesized that into something that we think is really leading the nation," said Brown. "People are going to look at Colorado as an example." (Hawryluk, Kaiser Health News, 4/25)


Advisory Board's take

Balancing provider representation and patient choice for more equitable care

By Sophia Duke-Mosier, Andrew Mohama, and Rachel Zuckerman

What Colorado is starting to do reflects a trend we have been observing in broadscale efforts to advance health equity: giving patients options for culturally responsive and representative care. More providers and health plans want to give patients options to seek out providers who have similar demographic characteristics and backgrounds to them. Because of how valuable culturally responsive and representative care are, this type of provider consideration is critical to equitable patient care. As highlighted above, there are potential risks involved with any disclosure of personal information. So, what should providers and health plans around the country do?

Validating provider and patient concerns

Let's first be clear about one thing: patient and provider concerns over privacy and safety are valid. This is especially true for people who are part of marginalized groups. Providers fear for backlash and discrimination based on their backgrounds and identities. And patients from marginalized groups often express fear over how their demographic information may be used when collected. This comes from (justified) historical distrust of the medical and health care system. In a vacuum, it makes sense that a patient would feel more welcomed and seen by a physician who deeply understands their identity, whether in gender, sexuality, race, and more. But any effort to advance health equity does not occur in a vacuum—there are deep systemic barriers and considerations to be addressed. There is certainly a way to balance provider representation and patient choice, but it must be handled carefully and directly in tandem with communities we are seeking to support.

How organizations are responding

During interviews with various organizations, we've heard that it's challenging to encourage staff members to ask for patient demographic information in the first place. They feel uncomfortable and don't know understand why it's important. To address this predicament, one organization held trainings to encourage an understanding of how and why the demographic information was being used. It was being collected to better understand disparities and advance equity related strategies. Overall, for organizations wanting to start collecting demographic information to match patients and providers, it may be easier to start with information that is outwardly visible, like race or language. It's crucial for organizations to also build trust with providers and demonstrate to them how they will be supported and protected from discrimination should it occur due to disclosing demographic information.

Uncovering different ways to care for diverse patient populations

Putting demographic data collection aside, we don't want to inadvertently segregate care delivery or put additional burden on clinicians (or patients) from marginalized backgrounds. While it's ideal to be able to give patients the ability to choose providers similar to them, this cannot be the end-all be-all strategy to provide equitable care. Organizations tend to over rely on the idea of matching patients and providers from certain backgrounds to "achieve health equity." However, this is not the case and cannot be an organization's sole strategy. There are many other strategies that advance health equity that are not about matching providers and patients.

All providers should be able to effectively care for all patients, and we are seeing medical education prioritize this learning in school curriculum. Beyond formal training, this comes from embracing cultural humility. Cultural humility has no end state and requires ongoing learning, self-reflection, and skill building for how to understand a person's cultural context through that person's own lens. Providers who practice cultural humility don't have to be representative of the patients they treat. Instead, they routinely interrogate their own identity and lived experiences and reflect on how they influence their interactions with others, ultimately leading to more equitable care.

Beyond cultural humility, organizations should embrace a biopsychosocial care model for all patients. Non-clinical barriers to health can account for up to 50% of health outcomes. As such, it is the responsibility of organizations to focus on supporting patients' social determinants of health needs to dramatically improve outcomes, especially for patients from marginalized populations.

Resources on provider diversity and equitable patient care:

 

 

 


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