By, KELLI MURRAY, MedSpeaks
What if..."we could develop a (method) that was faster, and provide the type of clinical expertise that a clinical neurologist would ask, to the fingertips of laymen," asked Anitha Rao, MD, MA. I recently met Dr. Rao, who is one of just 1,000 physicians globally with training in geriatric neurology and dementia, to learn about why and how she is answering this question.
Unbeknownst to her at the time, the path to entrepreneurship began with clinical experience in helping patients and their caregivers diagnose and navigate the various stages of memory loss. Dr. Rao identified common threads across symptoms, questions, and frustrations expressed by caregivers. These commonalities led her and a social worker to wonder if dementia care plans and education could be accurately generated using technology. Through experimentation, they found that it can - even in difficult cases.
Using evidence-based research and clinical guidelines, the Neurocern platform guides family members and caregivers through a series of questions about the patient's symptoms and concerns. The answers are analyzed using a proprietary algorithm and a series of predictive and prescriptive analytics to create a care plan from the personalized brain profile of the patient. Additionally, it provides a library of suggestions on managing and mitigating certain behaviors and situations. For instance, educating on how mirrors may cause a patient to have a traumatic response and/or an aversion to bathing out of fear that their own reflection is a stranger or intruder in the room.
The case for this type of caregiver resource is significant - particularly for geographic areas identified as "dementia deserts." Desert designations have been assigned to 20 states in Neurocern's ANDI study (Alzheimer's Disease and Related Disorders Neurology Desert Index) as having the lowest projected ratio of neurologists per 10,000 dementia patients based upon population health data from the Centers for Medicare and Medicaid Services. The list includes states such as Wyoming, North Dakota, South Carolina, South Dakota and Oklahoma.
According to Beth Kallmyer, MSW, Vice President of Constituent Services at the Alzheimer's Association, "This intriguing study highlights several issues, including the clear inequality that exists across the United States in distribution of health resources and specialist knowledge to diagnose and treat brain diseases, such as Alzheimer's."
Clinical extension solutions like Neurocern have a fit in helping providers and payers reach and leverage an untapped valuable resource - the family and caregivers within the patient's home. The industry is at an infantile stage when it comes to this type of engagement but the progression of its use is inevitable. For more information go to www.neurocern.com.
Look for additional physician driven innovations in future articles. If you'd like to nominate a company, invention, or process to be considered, please email firstname.lastname@example.org.
The Case for SOGI Data
By NINA TALLEY
Early last year, sexual orientation and gender identity (SOGI) questions were quietly removed from two federal surveys, the National Survey of Older Americans Act Participants and the Annual Program Performance Report for Centers for Independent Living. This move was a huge loss for both the LGBTQ+ and research communities.
"It's a big deal to make this change," Michael Adams, CEO of Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders, or SAGE, said. "What this is about is stripping out an entire population."
Having only been in circulation since 2014, the collection of SOGI data was described as "a pilot test" with an "insufficient" sample size by Kelly Mack, a spokeswoman for the Administration for Community Living, of the Health & Human Services (HHS) division, which oversees the surveys. LGBTQ+ advocates are incredulous of this claim.
The National Health Interview Survey (NHIS), which the HHS relies on to monitor trends in illness and disability and to track progress toward achieving national health objectives, has collected ethnicity data of its respondents for almost 20 years. This has resulted in a wealth of minority health data. For example, we know that older African Americans and Native Americans have the highest disability rates in America, followed by older Hispanic/Latinos. What we don't know is what percentage of those disabled populations identify as LGBTQ+. This is particularly notable as the tracking of these disability trends, which often project future disability rates, are especially important for the shaping of public policy.
The implications of the erasure on the LGBTQ+ patient population are stunning. As of 2000, there were more than 2 million older adults that identified as gay, lesbian, or bi-sexual. This number is on track to more than double, with a likely population of over 6 million LGBTQ+ seniors by 2030. Can you imagine? 6 million minority Americans becoming more reliant on physician care, with little to no data to support their aging transition, or to support the doctors who will care for them. But what can be done about this?
"The collection of SOGI data is important for understanding potential disparities and for building mutual trust and respect among healthcare providers, researchers, and our LGBTQ community," says Dr. Jason Flatt, an Assistant Professor at UCSF's Institute for Health & Aging.
The unique stressors facing the LGBTQ+ population are sure to create health trends unique to the population. The first step to identifying, and eventually treating those trends, is including SOGI-based questions, not just in federal surveys, but in all medical forms. We must modernize what we consider to be standard patient data to be inclusive, and to reflect our expanded understanding of the human condition.
Standard Sexual Orientation and Gender Identity Questions as identified by the The Williams Institute are:
What is your current gender identity? (Check all that apply.)
- Trans male/Trans man
- Trans female/Trans woman
- Genderqueer/Gender non-conforming
- Another identity: ____________________________
What sex were you assigned at birth, on your original birth certificate?
How would you describe your current sexual orientation? (Check all that apply.)
- Not listed above (please write in): _____________________
This is a highly emotional issue, with passionate arguments coming from both sides. But we must think of and understand our patient populations, all of them, in order to best serve them. In this case, a small but inclusive change could have a massive impact for generations of LGBTQ+ Americans.
Special thanks to Dr. Jason Flatt of the Institute for Health & Aging at University of California San Francisco for providing his unique insight on this matter.
TSOLife (The Story of Life) is creating innovative ways to preserve legacy and pass down life stories. The software solution enables assisted living communities, memory care communities, hospices, and funeral homes the ability to easily capture the life stories of their residents, while its family-facing online platform organizes and preserves these stories. For more www.tsolife.com
Neurocern - Founded by Anitha Rao, MD, MA, Neurocern is a caregiver platform aimed at the early identification and management of dementia and Alzheimer's patients living at home. The tool utilizes algorithms and family reported data to provide families with personalized care plans and access to the same types of tools used by neurology and geriatric care professionals. For more www.neurocern.com
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