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Research reveals how common online health marketing practices may violate patient privacy

Source: Cell Press
Date: 8/15/2022
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Newswise — The Health Insurance Portability and Accountability Act (HIPAA) was passed in 1996 to protect sensitive protected health information (PHI) from being disclosed without patient consent. But a study published August 15 in the journal Patterns shows that some PHI is not as secure as expected. Researchers reviewed the tactics of five digital medicine companies and the actions of cross-site tracking software to demonstrate how browsing data related to health topics is shared with Facebook for lead generation and advertising purposes.

“We started doing this research because we want to make sure people understand how they are targeted and followed across different digital platforms, including online health services and social media apps like Facebook,” says co-author Andrea Downing, an independent security researcher and co-founder of the Light Collective, a group created to study cybersecurity risks in the realm of patient privacy. “In my opinion, data gathering and predictive algorithms that are used for advertising and other purposes are one of the biggest threats to online patient communities.”

To conduct the analysis, the investigators recruited ten patient advocates and asked them to share data on how some of their online activities were being tracked. The investigators focused on patient advocates working in the hereditary cancer community space, particularly moderators of Facebook-based support groups. The participants were asked to download and share their JavaScript Object Notation (JSON) files. These files reveal how data are shared between web servers and web apps. The investigators used these files to determine how information flows from health-related websites and apps to Facebook for the purposes of targeted advertising.

The investigators focused on five clinical services used by the participants. They reviewed the companies’ websites for third-party ad trackers and looked at whether use of these ad trackers complied with the companies’ own privacy policies. They also looked at Facebook’s ad library for each participant to determine whether health data obtained through these companies influenced the types of ads that the participants were seeing.

“We constantly get bombarded by these ads,” Downing says. “Our question is, why they are being served up to us, and what information do these third parties have in order to serve up these ads?”

The five companies included in the analysis provide information or services (including genetic testing) related to inherited cancer risk. The investigators determined that two of the companies targeted ads but were consistent with their own privacy policies. The other three did not comply with their own policies and claims of privacy. “This loss of privacy can cause harm in the wrong hands, from people who want to scam the patient community or target them with misinformation,” Downing says.

This is the first peer-reviewed study from the Light Collective, which was founded in 2019 to study issues around patient privacy and digital media. Earlier this summer, the Light Collective brought their research to the Markup, a nonprofit news organization focused on the intersection of technology and society. The Markup published a related study about how hospitals share sensitive medical information collected on their websites with advertisers.

“We recognize that this is a small sampling that only scratched the surface, and clearly much more research is needed here,” Downing says. “We want to put this study in the hands of data scientists and to partner with researchers who can expand upon it. There is clearly a much-needed dialogue in this country about the state of health privacy and how it affects all patient populations.”

Eric Perakslis, Executive Director at the Center for Biomedical Informatics at Duke University, was the other co-author of the Patterns paper.

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Cultural Barriers to Genetic Testing

Source: Cell Press
Date: 6/7/2022
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As prices for genetic testing go down and awareness of what these tests can do goes up, more and more people are choosing to have their DNA analyzed. The underrepresentation of non-European ancestry groups in genomic databases, however, complicates the interpretation of their genetic test results.

In a commentary published on June 2 in the American Journal of Human Genetics(link is external and opens in a new window), researchers examine how “variants of uncertain significance” (VUS)—a genetic change whose impact on the individual’s disease risk is not yet known—are more likely to be identified in populations underrepresented in genetic databases, as well as ways to reduce their incidence.  

“A great deal of effort goes into broad-based projects that aim to recruit diverse segments of the population,” says first author Paul Appelbaum, MD, director of the Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics at Columbia University. “What’s different about our contribution here is the recognition that broad-based recruitment will need to be complemented by more focused efforts that take group concerns into account.”

There are practical and ethical reasons that VUS are important to address. Tests that yield a VUS fail to generate information that is useful clinically. Additionally, although current guidelines discourage clinicians from making treatment decisions based on a VUS, many clinicians and patients may feel compelled to act on them anyway. Discovery of a VUS can lead to anxiety, distress—especially variants in genes known to increase the risk of diseases like cancer—and, in some cases. even drastic interventions like prophylactic surgery.

Cultural Concerns

In this paper, the investigators focused on cultural issues among two ancestry groups, as well as culturally informed ways to address and overcome those issues.

For the first group—the Sephardi Jewish community in New York—they focus on the Dor Yeshorim project, an effort created to reduce the incidence of genetic diseases in the Jewish community, with an initial focus on Tay Sachs. The second group was the Silent Genomes Project, an effort housed at the University of British Columbia that aims to reduce healthcare disparities and improve diagnostic success for children with genetic diseases from Indigenous populations in Canada.

The two communities have very different concerns about contributing to genomic research and datasets. Sephardi concerns focus on the possible negative effects of genetic findings on the marriage prospects of family members. Canadian Indigenous populations seek control over the research uses to which their genetic data would be put.

“Both groups have specific cultural reasons for being hesitant to provide genetic data,” says Dr. Appelbaum, who is the Elizabeth K. Dollard Professor of Psychiatry, Medicine and Law at Columbia. “By working with them to find ways to address their concerns, we can overcome these hesitations.” 

Dr. Appelbaum acknowledges challenges in scaling up these kinds of efforts to reach other underrepresented populations and the lack of a one-size-fits-all approach. “For each of these groups, we need to recognize the reasons for their underrepresentation and work with them to find ways to address those concerns,” he says. He adds that it’s vital to obtain more funding for targeted recruitment efforts and to develop a governance structure that involves the relevant communities in an ongoing fashion.

“It’s crucial to know the frequency of variants in the population,” Dr. Appelbaum says. “And given differences in variant frequency across population groups and the prevalence of population-specific variants, comparisons with reference data from a specific ancestral group may be crucial. That’s true in both clinical settings and in research.”

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A call for global oversight of unproven stem cell therapies

Source: Cell Press
Date: 6/8/2021
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The promotion and marketing of unproven stem cell therapies is a global problem that needs a global solution, say experts in a perspective published June 8 in the journal Stem Cell Reports. The authors of the paper call for the World Health Organization (WHO) to establish an advisory committee on regenerative medicine to tackle this issue and provide guidance for countries around the world.

“The field of regenerative medicine, which entails the manipulation of cells and tissues to obtain therapeutic properties, has been hailed as the most promising research field in modern medicine,” says senior author Mohamed Abou-el-Enein, the executive director of the joint University of Southern California/Children’s Hospital of Los Angeles Cell Therapy Program. “Starting in the early 2000s, however, unregulated stem cell clinics offering untested and poorly characterized treatments with insufficient information on their safety and efficacy began emerging all over the world, taking advantage of the media hype around stem cells and patients’ hope and desperation.”

“Advancing regenerative medicine is key to addressing the chronic disease burden, which the WHO considers to be a top international priority,” says first author Zubin Master, an associate professor of biomedical ethics at the Mayo Clinic. “And even though we have had significant advancement in the field of regenerative medicine, more needs to be done to ensure the safe and timely delivery of evidence-based interventions to patients, many of whom have exhausted all available options.”

The three authors of the commentary are Lawrence Goldstein Science Policy Fellows for the International Society for Stem Cell Research (ISSCR) and ex-officio members of ISSCR’s Public Policy Committee. They decided to write it after realizing that the majority of efforts in this space have focused on the marketing practices of providers and clinics, with much less focus on the tightening of regulations and enforcement to deal with the issue from a global standpoint.

The commentary highlights several proposals, including the harmonization of regulatory definitions surrounding stem cell and regenerative medicine and the importance of balancing the scientific evidence demonstrating safety and efficacy of stem cell and regenerative products with the needs of the patient.

“Many patients with chronic diseases who desire a regenerative medicine option have exhausted conventional medicine treatments and have no other suitable option,” Master says. “We should aim to develop pathways to provide patients with evidenced-based experimental regenerative intervention as possible options where there is oversight, especially in circumstances where there is no suitable alternative left.”

The authors write that the WHO, which already has established an expert advisory committee to develop global standards for governance and oversight of human genome editing, could initiate a similar committee to address the spread of unproven stem cell treatments. They say that the committee could promote greater harmonization among regulatory standards, convince member nations to prioritize this issue on their public health agendas, and develop educational and outreach tools that could help increase awareness among physicians and patients on the danger of this practice.

“I believe that the global spread of unproven stem cell therapies reflects critical gaps in the international system for responding to health crises, which could put the life of thousands of patients in danger,” Abou-el-Enein says. “Urgent measures are needed to enhance the global regulatory capacity to detect and respond to this eminent crisis rapidly.”

The authors also propose the establishment of an active surveillance mechanism to collect and analyze information on dubious clinics performing these procedures and share it with the public to increase awareness, as well as taking the appropriate legal actions. They note the importance of educational programs for patients and physicians on the realistic potential of stem cells and the regulatory pathways that are in place for developing these promising therapies.

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Disabled researcher calls for better support for faculty

Source: Cell Press
Date: 5/18/2021
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Academic institutions need to do much more to support faculty members with disabilities and to create an environment in which they can thrive, argues a commentary published May 18 in the journal Trends in Neurosciences. The paper was written by Justin Yerbury, a cell and molecular neurobiologist who has amyotrophic lateral sclerosis (ALS), and his wife, Rachel Yerbury, a research psychologist.

“We want people to understand how tough life is for people with a disability,” says Justin Yerbury (@jjyerbury), a professor at the University of Wollongong in Australia. “When you add academia on top of that, it’s just incredible that disabled academics like me can actually continue to contribute in the way that we do.”

He uses a wheelchair, is unable to speak, and types by using eye movement, which means that typing a document takes him about ten times as long as it does for someone who types using their hands or voice commands. His research is focused on the molecular processes that underpin ALS, a disease that has affected many members of his family.

The commentary discusses how several aspects of academia create barriers for disabled investigators. Many of these obstacles are driven by high demands for bringing in grant money and producing frequent research publications. These challenges, which result in reduced funding when they are not met, in turn make it difficult to retain staff. This creates a cycle in which it’s very difficult for disabled academics to perform their jobs and carry out their research.

The authors note that visible disabilities, such as the one that Justin Yerbury has, as well as invisible disabilities, such as those people with most mental health disorders or people with autism who have typical functioning in most cognitive domains have, need to be taken into account when one considers constraints that make it difficult for people to compete at the academic level. They say that underrepresentation of people with disabilities in academia is not related to lack of interest on the part of people who might choose to enter the field but to the difficulties created by the high expectations of the profession.

In the commentary, the Yerburys point out that although universities offer accommodations and adjustments for disabled students, they don’t extend the same measures to faculty. “Perhaps it’s easier for universities to make adjustments for students, or perhaps it’s expected that if you get to the academic level, you can compete, cope, and flourish regardless,” says Rachel Yerbury, who is a research psychologist at the University of Wollongong and studies how nature affects mental health and well-being. She adds that universities might support students with disabilities because they don’t want to risk discrimination claims.

The Yerburys highlight several ways in which academia could improve. These changes include leveling the playing field and focusing on equity rather than equality; reducing the pressure to compete for all academics, which makes the field almost impossible for disabled academics and dissuades them from entering it in the first place; and challenging ableism in the academy. “Ableism, or the expectations of being able-bodied or able-minded, can be subtle and underhanded,” Rachel Yerbury says. “Many academics and institutions may not even realize that they labor under these assumptions.”

She adds that this problem is not unique to academia either. “I think most industries have a long way to go in terms of discrimination and ableism.”

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A psychologist’s guide to donating more effectively to charities

Source: Cell Press
Date: 4/29/2021
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The decision to donate to a charity is often driven by emotion rather than by calculated assessments based on how to make the biggest impact. In a review article published on April 29 in the journal Trends in Cognitive Sciences, researchers look at what they call “the psychology of (in)effective altruism” and how people can be encouraged to direct their charitable contributions in ways that allow them to get more bang for the buck — and help them to have a larger influence.

“In the past, most behavioral science research that’s looked at charitable giving has focused on quantity and how people might be motivated to give more money to charity, or to give at all,” says first author Lucius Caviola (@LuciusCaviola), a postdoctoral researcher in the Department of Psychology at Harvard University. “Our paper focuses on the effectiveness of giving — how people decide which charity to give to and ways that people can be motivated to give to charities that are more effective.”

In the paper, the authors present a framework that distinguishes between motivation-based and knowledge-based influences on charitable giving. They note that although people often say they want to give effectively, they may be drawn to charities that are less effective and may not know how to determine which charities are more effective. The authors also discuss interventions that could encourage more effective altruism, such as providing more tangible details about a charity’s intervention strategies and how donors’ money is used.

Caviola believes that overhead ratios, which report what portion of donations goes to a charitable organization’s costs of operation versus its cause, and which many people focus on, are not the best way to measure a charity’s effectiveness. “These are completely different things, and I would argue that overhead ratio is irrelevant,” he says. “When someone does research before buying a car, they want to get the best car for their money, not the one where the company devoted the highest percentage of its profits directly to manufacturing costs.”

Instead, he says, more people should defer to experts that evaluate charities based on their effectiveness. “According to expert estimates, the most effective charities are often a hundred times more effective than typical charities,” the authors write. “A $100 donation can save a person in the developing world from trachoma, a disease that causes blindness. By contrast, it costs $50,000 to train a guide dog to help a blind person in the developed world. This large difference in impact per dollar is not unusual.” The authors cite the organization GiveWell as a reliable source of such information, based on its criteria designed to help donors do as much good as possible with every donation they make.

The authors acknowledge the importance of emotion in donating to charity and suggest that dividing donations between charities that are emotionally appealing and those that have the greatest impact can be an effective way to address both sides of this issue. “Research has shown that there are psychological conflicts between these two preferences,” Caviola says. “We have demonstrated that if you allow people to split their contributions, it can help them to resolve these conflicts.”

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Survey finds American support for human-animal chimera research

Source: Cell Press
Date: 10/1/2020
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In September 2015, the US National Institutes of Health placed a funding moratorium on research that involves introducing human pluripotent stem cells into animal embryos — a practice that experts say is vital for advancing the field of regenerative medicine. To assess attitudes on human-animal chimeric embryo research, investigators conducted a survey among 430 Americans. The results of the survey, which found that 82% of people are supportive of at least some parts of this research, appear October 1 in the journal Stem Cell Reports.

“The take-home point is that the overall support for this kind of research across the American public is strong,” says co-author Francis Shen, a professor of law at the University of Minnesota and executive director of the Harvard Massachusetts General Hospital Center for Law, Brain, and Behavior. “I think this speaks to the public’s interest in the transformative potential of regenerative medicine for addressing disease in a variety of organs.”

“Public attitudes were more supportive than I thought would have been possible in the current political climate,” says first author Andrew Crane, a researcher in the Department of Neurosurgery at the University of Minnesota.

Crane and senior author Walter Low, a professor in the Department of Neurosurgery and Stem Cell Institute at the University of Minnesota, conduct research on stem cell applications for neurological disorders like Parkinson’s disease. One project focuses on generating human neural stem cells within pig brains. After learning that colleagues in Japan had done a survey on public attitudes about this type of research, they decided to conduct a similar study in the United States. Low and Crane began a collaboration with the Japan group and with Shen, who specializes in ethics at the intersection of law and neuroscience.

The study included two waves of data collection: 227 participants were surveyed in July 2018 and 203 additional participants were surveyed in June 2020. The participants were recruited through an Amazon service called Mechanical Turk and were paid $1 for completing the survey. The questions in the survey were similar to those included in the Japanese study.

The participants knew “next to nothing “about this research going into the survey, Shen explains. “We used images, and we clarified how this research might be done, breaking it down into steps.”

The survey questions were designed to assess opinions on the progressive steps of human-animal chimeric embryo research, by asking participants which aspects of research they were willing to accept based on their personal feelings. For example, it included scenarios about first injecting human stem cells into a pig embryo, then transplanting that embryo into a pig uterus to produce a pig with a human organ, and finally transplanting that organ into a human patient. It also broke down research by organ, with support for some tissue types being higher than others: 61% for heart, 64% for blood, 73% for liver, and 62% for skin, versus 44% for sperm/eggs and 51% for brain.

“With regard to putting human brain cells into animal brains, we’ve heard concerns about the animals having some sort of human consciousness, but that’s quite far off from where the science is right now and from anything that we’ve tried to advocate for in our research,” Crane says. “We understand this is a concern that should not be taken lightly, but it shouldn’t prohibit us from moving the research forward.”

The survey was also designed to assess cultural differences, and the researchers were surprised to find that support was relatively high even among religious and cultural conservatives. The largest factor influencing opposition to the research was concern about animal rights.

“As investigators in the US, we’ve hit a roadblock with a lot of this research with regard to funding,” Crane says. He adds that a lack of funding could lead to the research moving to countries with fewer ethical safeguards in place.

“The three biggest concerns about this research are animal welfare, human dignity, and the possibility of neurological humanization,” Shen concludes. “We would love to do focus groups to look deeper at some of these questions.”

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Bioethicist calls out unproven and unlicensed ‘stem cell treatments’ for COVID-19

Source: Cell Press
Date: 5/7/2020
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As the COVID-19 pandemic enters its third month, businesses in the United States are marketing unlicensed and unproven stem-cell-based “therapies” and exosome products that claim to prevent or treat the disease. In Cell Stem Cell on May 5, bioethicist Leigh Turner describes how these companies are “seizing the pandemic as an opportunity to profit from hope and desperation.”

“I’m concerned that individuals purchasing these supposed ‘therapies’ for COVID-19 will be scammed,” says Turner (@LeighGTurner), an associate professor at the University of Minnesota Center for Bioethics. “I’m also worried that they’ll be injured as a result of being given products that haven’t been adequately tested, or that they’ll forgo measures like social distancing because they’ve paid for a product that they think will protect them from being infected or getting sick.”

Many stem cell clinics have a history of selling unproven and unlicensed interventions for injuries and illnesses ranging from Alzheimer’s disease to pulmonary disorders to spinal cord injuries. Since the COVID-19 pandemic began, some have added claims about “immune-boosting” therapies for treating COVID-19 and acute respiratory distress syndrome (ARDS) caused by infection with SARS CoV-2. These companies advertise stem cell interventions and exosome products derived from such sources as umbilical cords and amniotic fluid. Turner says uncritical news media accounts have compounded some of these claims by reporting on preliminary evidence and case studies.

Yet rigorous clinical trials on these stem cell products have not yet been done. “Randomized controlled trials are needed to establish whether particular stem cell products are safe and efficacious in the treatment of COVID-19-related ARDS,” he explains.

Turner has studied the US direct-to-consumer marketplace for stem cell clinics for nearly a decade. “These businesses have a long history of claiming to treat diseases and injuries for which evidence-based therapies do not yet exist,” he says. To find out what these businesses were promoting, he did Google searches on a variety of terms related to stem cell treatments, COVID-19, and ARDS. He also searched YouTube for promotional videos made by these clinics.

“I found more examples of businesses peddling stem cell products for COVID-19 than I had space to describe in detail,” he notes. “I wasn’t surprised at how quickly some of these companies began making these claims. For them, the COVID-19 pandemic is an opportunity to generate a new revenue stream.”

In the paper, Turner also discusses the role of medical organizations, noting that while most are doing a good job of criticizing deceptive advertising, some have been promoting these interventions despite the lack of scientific evidence supporting their use.

“I want members of the public to know that some companies are trying to take advantage of them by selling supposed treatments that aren’t backed by credible evidence,” Turner concludes. “I’m also hoping that this paper will catch the attention of regulatory bodies like the Food and Drug Administration (FDA) and the Federal Trade Commission (FTC), as well as state medical boards and state attorney general offices. The FDA and FTC have issued letters to some businesses, but additional regulatory action is needed.”

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Embedding Diabetes Care in the Latino Community

Source: Brigham and Women's Hospital
Date: 5/24/2023
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Brigham and Women’s Hospital has adopted a new approach to providing diabetes care for Latino (LatinX) and Hispanic patients that involves embedding diabetes specialists in community clinics and offering culturally appropriate services to help patients control their disease and related complications.

The new model for care is spearheaded by A. Enrique Caballero, MD, director of Latino Diabetes Health in the Division of Endocrinology, Diabetes and Hypertension. His work developing comprehensive models of diabetes care for the Latino/Hispanic community has earned widespread recognition since he founded the Latino Diabetes Initiative at the Harvard-affiliated Joslin Diabetes Center (JDC) in 2002. Recently, for example, he received the American Diabetes Association’s Outstanding Educator in Diabetes Award for his work with the Latino population and his leading role in professional education.

“Despite meaningful advances in diabetes care, we are falling short in helping many patients achieve treatment targets,” Dr. Caballero says. “This burden is particularly taxing among Latino and Hispanic populations and leads to increased risk of complications and comorbidities.”

Delivering Diabetes Care Closer to Home

Dr. Caballero transitioned from the JDC to the Brigham in 2018 and decided to establish his practice at the Brigham’s Southern Jamaica Plain Health Center, which is in a culturally diverse neighborhood with many Spanish speakers. There, he sees patients during routine appointments with their Brigham primary care providers and supplies targeted education, outreach services, and research opportunities that would otherwise be difficult or impossible for patients to access.

His presence in the clinic gives Dr. Caballero the opportunity to guide the clinic’s primary care providers on how to better assess and treat patients with diabetes. It also supports a multidisciplinary, collaborative approach that allows him to stay closer to patients’ other health needs and improve the management of chronic diseases like diabetes.

“Ninety percent of diabetes care is delivered by primary care providers, and many health systems require patients to travel to a main campus for specialty care,” Dr. Caballero says. “The Brigham has made a commitment to reducing health disparities among underserved populations by bringing that care closer to home and involving the entire care team, including primary care providers, nurses, dieticians, social workers, educators, pharmacists, and population health specialists.”

Care at Dr. Caballero’s clinic also feels closer to home for Latino patients because all providers on staff are fluent Spanish speakers. Furthermore, Dr. Caballero conducts all his patient encounters in Spanish, which leads to enhanced provider-patient concordance, better engagement, more authentic conversations, and more productive interactions. Patient education materials are linguistically and culturally appropriate to help patients better understand and comply with treatment and lifestyle recommendations.

Patient Management Plans Consider Social Determinants of Health

To further reduce diabetes care inequalities in the Latino community, Dr. Caballero’s initiative combines the latest evidence-based strategies for diabetes care with a focus on social determinants of health (SDOH). He says this area has been long neglected in diabetes care.

“Traditionally, the physician’s role has been to make a diagnosis, recommend a treatment, and send the patient along their way,” Dr. Caballero says. “We are moving beyond that approach by talking with patients about the financial, societal, cultural, emotional, and family support factors that influence their behavior so we can be more effective in helping them reach their treatment goals.”

For example, while healthier eating is a first-line recommendation for diabetes patients, many underserved patients are food insecure and struggle to afford or access healthy food (especially if they live in a food desert, where residents have limited access to affordable, nutritious food providers). A doctor’s recommendation to exercise more may be unattainable for those who can’t afford a gym membership or find welcoming fitness facilities. Compliance with medication protocols may prove difficult for patients who lack adequate insurance coverage.

To address these SDOH issues, members of the clinic’s multidisciplinary team talk to patients about free and reduced-cost nutrition, exercise, and medication assistance programs.

“While the science of caring for diabetes patients with new technologies and new medications continues to move forward, it is not the whole solution,” Dr. Caballero says. “We also need to focus on the art of caring for diabetes patients by addressing their social, cultural, emotional, and economic concerns. Everyone at the Brigham is committed to working against health disparities and doing the best possible job of acknowledging these social determinants of health.”

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How Trauma Informed Care Improves The Patient Experience

Source: Brigham and Women's Hospital
Date: 2/24/2022
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Over the past two years, the COVID-19 pandemic and a renewed emphasis on issues surrounding racial justice have brought the need for trauma-informed healthcare into greater focus. Trauma-informed care is based on a framework that recognizes people’s lived experiences can affect how they engage with the healthcare system.

Trauma-informed care programs have been in place for a decade at Brigham and Women’s Hospital but are now expanding across more areas. The emphasis on this type of care has contributed to a greater awareness of societal issues and the development of clinical programs and policies that minimize the chance of retraumatizing patients.

“Many people have experienced traumas of a variety of sorts, even if they don’t have a diagnosis of post-traumatic stress disorder,” says Nomi Levy-Carrick, MD, MPhil, a consultation-liaison psychiatrist in the Department of Psychiatry at the Brigham. “Through training of providers and staff, we can help ensure these patients get healthcare that takes their individual histories into consideration. This need is often amplified for people with chronic illnesses who require ongoing care.”

Guiding Principles for Patient Resilience

As Dr. Levy-Carrick explains, the difference between trauma-focused care and trauma-informed care is an important one. “We are not talking about care that’s focused on the specific trauma content itself,” she says. “Rather, this is care that is mindful about recognizing how a patient’s past experiences, whether individual, interpersonal or community-based, can impact their current engagement in healthcare.”

The Substance Abuse and Mental Health Services Administration within the U.S. Department of Health and Human Services has created six guiding principles for trauma-informed care, which aim to restore feelings of safety and self-worth in patients while promoting healing. These principles are:

  • Safety
  • Trustworthiness and transparency
  • Peer support and mutual self-help
  • Collaboration and mutuality
  • Empowerment voice and choice
  • Cultural, historical and gender issues

“As a consultation-liaison psychiatrist, I work with colleagues across the institution to make sure everyone who has contact with patients is aware of these principles and how to apply them. We see this as a clinical component of overall health equity efforts,” says Dr. Levy-Carrick, who serves as co-chair of the Mass General Brigham Trauma-Informed Care Initiative. This includes not only clinical staff, but also those who handle patient check-ins, scheduling requests and other issues.

Annie Lewis-O’Connor, PhD, NP-BC, MPH, FAAN, is a nurse scientist and the other co-chair of the Trauma-Informed Care Initiative. She also founded and directs the Brigham’s Coordinated Approach to Resiliency & Empowerment (CARE) Clinic, which provides coordination of care for individuals impacted by interpersonal violence and trauma.

“What I love about the trauma-informed care model is that it addresses issues of equity and allows patients to provide input about their preferences and desires,” Dr. Lewis-O’Connor says. “Instead of having a system where you do things ‘to’ or ‘for’ the patient, trauma-informed care means doing ‘with’ the patient. It’s a very different way of delivering healthcare.”

Impact of Care Model Spans Many Departments

From 2018 to 2020, Drs. Levy-Carrick and Lewis-O’Connor were members of an interdisciplinary team that received funding through the Robert Wood Johnson Foundation Clinical Scholars Program to create, implement and evaluate a trauma-informed care model in the Brigham’s Department of Emergency Medicine. The other team members were Samara Grossman, MSW, LICSW, of the Department of Psychiatry; Eve Rittenberg, MD, of the Fish Center for Women’s Health; and Hanni M. Stoklosa, MD, MPH, of the Department of Emergency Medicine.

The emergency department is one area where this care model is so important because trust with patients must be established quickly. “Transparency is a really valuable way of doing that,” Dr. Levy-Carrick says. “Our communications with patients must be very clear. We want to empower them to share information about their history in a way that makes them comfortable.”

Dr. Levy-Carrick has also collaborated with pulmonary and critical care medicine specialists Daniela J. Lamas, MD, and Gerald Lawrence Weinhouse, MD, along with social worker Stacey Salomon, LICSW, to include a trauma-informed framework for the Critical Illness Recovery Program to improve the lives of patients with post-intensive care syndrome.

Dr. Lewis-O’Connor adds that this care model has been invaluable in supporting staff, both in terms of how workers across the Brigham relate to each other and how they have coped with trauma, stress and racism over the past two years.

“For the first time, it’s probably more uncomfortable for the people in the room if we don’t talk about these things,” she says. “There’s been a real shift. People are finding their words and finding safe spaces to talk about their past experiences.”

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IMPROVING TELEHEALTH IN PSYCHIATRY FOR NON-ENGLISH SPEAKERS

Source: Brigham and Women's Hospital
Date: 1/7/2021
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Telemedicine has become an increasingly important mode of care during the COVID-19 pandemic. Certain specialties lend themselves to telemedicine to a greater degree than others. One of these is psychiatry, thanks in large part to relevance of observation and conversation with patients and their families to obtain neuropsychiatric history.

However, certain populations of patients have a more difficult time accepting telemedicine than others — for instance, those who are over age 60 or don’t speak English. For those people who are in both of these categories, experts at Brigham and Women’s Hospital are conducting research to identify specific barriers to care and soliciting feedback on how the needs of these vulnerable patients can be better addressed.

“The language barrier alone is a big issue,” said Juan Carlos Urizar, MD, director of clinical services in the Brigham’s Division of Geriatric Psychiatry and a neuropsychiatrist specializing in treating patients who have psychiatric disorders related to neurological conditions. “But we also want to understand the other underlying factors that may make it difficult for us to reach these patients.”

Identifying Barriers to Telemedicine in Psychiatry

According to Dr. Urizar, a significant portion of patients seen within his division, both at the main hospital and at the Brigham’s satellite clinics, are Hispanic. Many of them don’t speak English, necessitating either health care providers who speak Spanish or interpreters.

“When the pandemic surged during the spring and summer of 2020, we were not able to connect as efficiently with our Hispanic patients,” he said. “We learned that in many cases, it was more than language barriers.”

One common problem was the lack of technology, such as computers, tablets and smartphones. But even people who have access to these technologies and use them to communicate with family members may feel uncomfortable with the specific software and platforms that are required for telemedicine due to privacy requirements, Dr. Urizar noted. Other concerns that have come up in this patient population are issues of racial discrimination as well as fears that sessions could be recorded and used against them in the context of deportation.

Reaching a Population That Can Benefit From Telehealth

Dr. Urizar and his colleagues, including geriatric psychiatrist Catherine Gonzalez, MD, and medical interpreter Margarita Avila-Urizar, MD, are now embarking on research to survey their patients and get to the heart of these dynamics.

“It’s important for us to understand these issues. We know that video calls are important in evaluating many of our patients, in large part because they most closely resemble face-to-face meetings,” Dr. Urizar explained. Because he often treats patients with neurological disorders such as Parkinson’s disease and Alzheimer’s disease, it is crucial for him to be able to see and hear his patients.

Dr. Urizar explained that even after the COVID-19 pandemic is over, telemedicine will continue to be an important part of medical care, especially in neuropsychiatry. “Many of my patients have problems getting to their appointments because of limitations with their mobility and other issues,” he said. “For these populations, telemedicine will continue to be a good way to reach out and connect.”