The STARR News: July 2023 |
|
July is
BIPOC Mental Health Month
BIPOC (Black, Indigenous, and People of Color) Mental Health Month is observed each July to bring awareness to the unique struggles that racial and ethnic communities face regarding mental illness in the United States.
Racial and ethnic minorities often suffer from poor mental health outcomes due to multiple factors, including lack of access to quality mental health care services, cultural stigma surrounding mental health care, and discrimination.
We love MHA's BIPOC Mental Health Month theme of Culture, Community, & Connection:
"Our lives are deeply intertwined with our environments, and these surroundings impact our mental health and overall wellness. Black, Indigenous, and people of color (BIPOC) populations are faced with disproportionate amounts of historical trauma and displacement that can challenge their ability to thrive in their environments. However, culture, community, and connection are pillars that support and uplift BIPOC individuals in the face of oppression and systemic racism."
Check out MHA's BIPOC Mental Health Month resources HERE.
DBSA also has some great resources for BIPOC Mental Health Month. We love their information on how culture and identity impact mental health -- check it out HERE.
Learning about how culture and identity factors affect mental health is the first step to addressing inequality and ensuring everyone has access to mental health care. ❤
|
|
July 16th Marks the One-Year Anniversary of the Three-Digit 988 Suicide and Crisis Lifeline.
988 connects callers experiencing a mental health crisis to over 200 call centers with trained crisis counselors. July 16th marks the one-year anniversary of this significant change in accessing mental health support.
From July 2022 through March 2023, the Lifeline received more than 3.6 million contacts. Thanks to a hiring spree at many call centers, national answer rates are 88% as of March 2023, a significant increase from years prior. For example, answer rates were 64% in December 2021, according to a report by the Kaiser Family Foundation (KFF) (source).
The easier access and extended services, however, have created another challenge: the need for more mental health providers to staff 988 call centers. A year in, many call centers nationwide are still seeking volunteers or staff to help people in crisis.
Lillian Turner, a Lifeline counselor from Community Crisis Services, Inc. (CCSI) answers calls for the 988 Lifeline. On a slower day, Turner receives anywhere from 10 to 15 calls from the 988 Lifeline alone. On her busier days, she can get up to 30. Last summer when 988 launched, she received more calls than ever before.
When someone calls and indicates that they are suicidal, Turner immediately goes through a checklist, starting making sure the caller has no weapons and asking how long they have been feeling this way. She then works with the caller to come up with a safety plan. “The majority of the time they’ll talk and be open to developing a safety plan,” Turner said. “I always offer a follow-up call, so they know they’re not alone even after they hang up the phone.”
If the caller is actively attempting suicide, Turner will call the police and find the individual’s location using their phone number. “But 90% of the time, it’s just about listening, hearing people out, and not problem-solving,” said Turner. There are also many repeat callers who call in every day whom Turner knows by name. “I show that I empathize with them and ask them to tell me more about what is going on in their life. That’s really all they need.”
Call centers nationwide are always looking to bring on more graduate students and psychologists as volunteers and paid employees to help answer calls, texts, and chats from people in crisis.
Crisis counselors receive an average of 90 hours of training before taking 988 Lifeline calls. However, there is currently no standard training program for counselors; each call center in the 988 network develops their own training curriculum that meets their community’s needs.
In November 2022, Vibrant Emotional Health, the organization that administers the 988 Lifeline, launched a core curriculum to support crisis centers across the country and to ensure that anyone who contacts the Lifeline receives consistent, effective, research-based support from the crisis counselors.
|
|
NAMI-NYS and NAMI-NYC
Created a "411 on 988" Resource Guide
NAMI-NYS and NAMI-NYC hosted a webinar focused on 988 and mental health crisis services. The session also discussed next steps in reimaging crisis situations such as Daniel's Law. Click here to watch.
Along with the webinar, NAMI produced a Know Your Rights Resource Guide on Crisis Services, which contains some fantastic information that is relevant to more than just those living in NY, including myths vs. facts about 988. The guide also offers advice on how to communicate to first responders and details new initiatives such as Daniel's Law and the Handle with Care registry.
|
|
This month's STARR Podcast Spotlights
Carmine Johnson
Lived-Experience,
Working in Industry
Join Mallory as she sits down with Carmine Johnson in this special episode honoring BIPOC Mental Health Month. Carmine wears many hats in her work and personal life and has a unique perspective of being a woman of color, working in industry, with lived experience with serious mental illness. On this episode, Carmine walks us through what was like to live with her symptoms prior to her diagnosis with Bipolar Disorder and how she has managed her symptoms throughout the years. This story is one of heartbreak and triumph, and certainly one that provides immeasurable hope for individuals living with serious mental illness.
Meet Carmine on this month's featured podcast HERE.
For this and all of the STARR Podcasts, you can find the STARR Podcast archive HERE.
|
|
Update on the STARR Advocacy Board
The STARR Coalition Advocacy Board remains committed working with advocacy to champion clinical research and expanded treatment options for individuals with mental illness. This year, we have achieved significant milestones, including organizing and hosting an Advocacy-Led Roundtable, welcoming six new board members, forging partnerships with four additional Advocacy Organizations, and committing to sponsor an Out of The Darkness Walk in the upcoming fall of 2023.
The STARR Advocacy Board continues our mandate of bridging the gap between industry and advocacy. The Board meets monthly to forward our initiatives, which include:
- Creating resources for STARR advocacy partners to connect with the mental health clinical research community, and be supportive of research within their organizations;
- Providing a platform for the STARR community to connect with our advocacy partners.
- Support discussion around ensuring that lived experiences take center stage in clinical research.
- Recently, we have been building a program to foster connections with caregivers of loved ones in clinical trials. We believe in their inclusion and are actively working towards educating them about the significance of clinical trials.
If you are interested in joining The STARR Coalition Advocacy Board, please email Mallory at mallory@thestarr.org.
|
|
Diversity Requirements Imminent: Age, Sex, Race -- Are You Prepared?
The FDA's draft guidance, “Diversity Plans to Improve Enrollment of Participants from Underrepresented Racial and Ethnic Populations in Clinical Trials” was issued in April of 2022 to provide guidance and recommendations to sponsors for developing diversity plans to enroll adequate numbers of participants in clinical trials from underrepresented racial and ethnic populations in the US.
Seven months later (in November 2022), Congress pushed things further forward by requiring sponsors to submit a diversity action plan with the study protocol to the FDA. This requirement, enacted under the Food and Drug Omnibus Reform Act (FDORA), will apply to clinical trials that commence enrollment 180 days after the FDA finalizes guidance on the topic, and requires the FDA to finalize the guidance within twelve months of its enactment -- which means by the end of 2023.
The Act provides a lot of detail in what the guidance—and in turn, diversity action plans— should cover. Many of these details track what FDA already recommends in the April 2022 draft guidance. Diversity action plans should contain (1) the sponsor’s goals for clinical study enrollment, disaggregated by age group, sex, and racial and ethnic characteristics; (2) the rationale for these enrollment goals, including information about the disease or condition and its prevalence or incidence among various demographics; and (3) how the sponsor intends to meet such goals, including demographic-specific outreach and enrollment strategies, inclusion and exclusion practices, and diversity training for study personnel.
What does this mean to sites?
- Your database needs to include age, sex, and race.
- Your community demographics information should be accurate, current, and supported by a source.
- Your diversity engagement plan should include concrete plans and action-items.
- You may need to be prepared to defend your diversity program.
That is the short list -- there will undoubtedly be more requirements, but being prepared with the information above will prevent being caught-out next year, when the requirements will go into effect.
Sources:
|
|
An ally is an individual who unites themselves with another to promote a common interest where both benefits. Allyship isn't about “paving the way” but rather to walk the walk with those of marginalized groups. Sharing the lessons learned and developing methodological strengths from bench to bedside to the community and back have been common themes across these alliances. Sincerity, authenticity, and trust are essential in our alliances.
Allyship can be a small action. You don't have to make a big, grand gesture to be an ally. An ally can serve as a mentor or a voice for someone who doesn't have a voice. An ally can support a culture of inclusion by engaging with their marginalized colleagues and providing support in their daily lived experiences. When marginalized groups feel supported and included, they are more comfortable bringing their whole selves to work and tend to be more engaged and productive, thus creating a more enjoyable environment for everyone. (Source: NIH 'What is Allyship' blog post)
|
|
Pillar Clinical Research is sponsoring regional Out of the Darkness Walks, hosted by the American Foundation for Suicide Prevention (AFSP). The Out of the Darkness Community Walk is a remembrance, hope, and support journey. It unites communities and provides an opportunity to acknowledge the ways in which suicide and mental health conditions have affected our lives and the lives of those we love and care about.
This year, Pillar Clinical Research is supporting the walks in Little Rock and Northwest Arkansas, Chicago, Illinois, and The Dallas Fort Worth Metroplex, Texas.
|
|
In recognition of Alzheimer’s and Brain Awareness Month in June, CenExel iResearch partnered with Global Alzheimer’s Platform Foundation and Second Wind Dreams for a Lunch ‘n Learn presentation in Roswell, GA. Those in attendance learned more about Alzheimer's disease and the importance of brain health, early detection, clinical research and patient education. JULY
|
|
Segal Trials hosted a table at the Social Workers Conference (June 14-16) in Orlando to provide information on how clinical trials are helping to advance medicine for generations to come. The Segal team had a great time meeting with social workers from across the region to talk about how clinical research is not only a safe care option, but offers opportunities for their patients and clients to be more involved in their mental health care.
|
|
CenExel RCA staff participated in a much needed Staff Appreciation / Mental Health day! The whole team took the day off for some morale-boosting fun at the bowling alley.
What a great way to build teamwork, support workplace wellness, and show some staff appreciation!
|
|
The STARR Coalition’s Director of Advocacy Engagement, Mallory Mercer, attended the NAMI Conference in Minneapolis, Minnesota this past May. This was the first in-person NAMICon following the COVID-19 pandemic, and the excitement of all of the attendees was evident. Each session was well attended, with many STARR Coalition members ready to support the National Alliance on Mental Illness in various capacities and soak in as much information as possible on treatment options for individuals with lived experience, DE&I education, and partnership opportunities. |
|
We were delighted to see so many of our members step up as event sponsors, including Alkermes, Teva, Biogen, Boehringer Ingelheim, Karuna Therapeutics, and Intra-Cellular Therapies. Mallory was especially glad to connect with many local NAMI chapter affiliates in efforts to connect them with various STARR resources, including partnerships with local research sites and our empathy based training such as the Auditory Hallucination Simulation and STARR911.
This opportunity to connect with so many advocacy partners and industry members was incredible, and the STARR is excited to continue to support NAMI and their efforts to offer resources to individuals and families experiencing mental illness.
|
|
Limiting Social Media Use Boosts Mental Health -- A simple intervention, limiting daily social media use, can significantly enhance the mental health of young adults. The two-week experiment involving 230 college students found that those who limited their social media usage to 30 minutes a day, aided by automated reminders, experienced significantly less anxiety, depression, and loneliness. Notably, they also reported a more positive affect, displaying a brighter outlook on life. The beneficial psychological effects extended even to participants who occasionally exceeded the set limit.
Microglia’s Role in Controlling Anxiety and OCD -- A new study reveals how microglia can regulate anxiety and obsessive-compulsive spectrum disorder (OCSD) behaviors. Traditionally overlooked in favor of neurons, specific microglia populations were found to both stimulate and suppress these behaviors, thus acting as both a “brake” and “accelerator”. University of Utah Health scientists achieved this by employing optogenetics to stimulate different microglia populations in the brain. These new findings open up promising avenues for targeted therapies.
Daily multivitamin may enhance memory in older adults -- A research team led by Dr. Adam M. Brickman of Columbia University found that daily multivitamins led to modest improvements in memory over a three-year period in older adults. The study included more than 3,500 volunteers, ages 60 and older. When the study began, the participants took a series of web-based online tests to assess their cognitive abilities. The tests were then repeated annually for three years. At the end of the first year, people taking the daily multivitamin had significantly higher scores on a test of immediate recall compared to the placebo group. The greatest increase was seen in those who had underlying cardiovascular disease. Participants with a history of cardiovascular disease had lower immediate-recall scores at the start of the study compared to those without such history. But after one year of taking multivitamins, the scores of those with cardiovascular disease improved significantly, becoming comparable to those without the disease.
Alliance for Patient Access released 'Leading Health Economics Organization Overlooks Societal Value of New Drugs' report. Assessing the value of a medication should include the benefits that a treatment offers society overall, not just the value it offers payers or the health care system. Current cost-effectiveness models, however, have been slow to adopt this standard. A review of assessments from the Institute for Clinical and Economic Review (ICER), a well known value assessment organization, shows that the organization frequently deviates from its commitment to applying a modified societal perspective to its assessments.
Redefining Depression: TBI Affective Syndrome Discovered -- A new study suggests that depression post-traumatic brain injury (TBI) may be a distinct disease separate from traditional major depressive disorder. This revelation, arising from unique patterns observed in brain maps of TBI patients, could revolutionize the treatment for such individuals. The study proposes a new term for this variant of depression – “TBI affective syndrome”. Fundamentally, this research marks a significant step toward personalized treatment strategies for TBI patients.
Early Hallucinations in Parkinson’s Tied to Faster Cognitive Decline -- Early hallucinations in Parkinson’s disease patients might signal a faster cognitive decline. Through comprehensive neuropsychological interviews and electroencephalography measurements, researchers were able to link minor hallucinations, typically underreported, to more rapid deterioration of frontal executive function in subsequent years. The finding emphasizes the need for early detection and intervention, providing valuable insights into potential markers for severe Parkinson’s disease.
Concept Creep: How Our Concepts of Anxiety and Depression Are Changing -- A study exploring “concept creep” suggests that, with increased mental health awareness, the concepts of “anxiety” and “depression” are broadening. The study revealed that, contrary to expectations of less emotionally intense use, these terms have taken on more severe connotations over the past five decades. This shift is driven by increased association of these words with each other and with illness-related terms, like “disorder” and “symptom”. While raising awareness is crucial, the study warns of potential risks of over-pathologizing everyday mood states.
Vitamin D’s Crucial Role in Dopamine Function and Schizophrenia -- Neuroscientists at The University of Queensland discovered how vitamin D deficiency impacts the development of neurons, contributing to disorders such as schizophrenia. Researchers were able to observe that a lack of vitamin D not only changes neuron growth but also affects the brain’s dopamine release mechanism. They found dopamine release was enhanced in cells grown in the presence of vitamin D, compared to a control. This study underscores the importance of vitamin D in the structural differentiation of dopaminergic neurons and suggests that maternal vitamin D deficiency might alter how early dopaminergic circuits form. (Yes, this was posted last month, but Vitamin D!!)
Poor air quality found to affect mental health in many ways -- Research out of the University of Oxford's Department of Psychiatry found evidence that exposure to air pollutants may lead to depression, anxiety, psychoses, and perhaps even neurocognitive disorders, such as dementia. There were also indications that children and adolescents might be exposed to air pollution at critical stages in their mental development making them at risk of the most severe impact and significant future mental health problems.
|
|
This year marks 15 years of “Alkermes in Action,” the Alkermes' employee-led volunteer program that supports local non-profit organizations through hands-on activities. This month, more than 200 Waltham-based employees participated in the Alkermes-in-Action day of service to support people and organizations in and around Greater Boston.
Whether preparing and providing meals to people living with chronic illness and experiencing nutrition insecurity, assembling care packages for unhoused individuals, maintaining and preserving public recreation spaces, or assembling beds for children who are without a bed of their own, each of our partner organizations are driven by a mission that addresses critical and urgent unmet needs facing our communities.
Since its creation in 2009, more than 5,000 Alkermes volunteers have dedicated their time to 50+ local community groups, establishing long-term relationships between Alkermes and organizations that share our goal of improving the lives of people in need.
|
|
NAMI-TX is hosting a Texas Mental Health Post-Legislative Session Webinar on July 20th at 11am CT. Join NAMI Texas for this informational webinar for updates on the latest mental health policies passed into Texas state law, and the key funding opportunities for the mental health system, among other updates. Register in advance here.
|
|
The 148th Annual Meeting of the American Neurological Association (ANA2023) will be held in Philadelphia, September 9-12, 2023. The Annual Meeting will convene the nation’s top academic neurologists and neuroscientists. Learn more here.
|
|
REGISTRATION NOW OPEN for the 11th Annual “Rally for Medical Research Hill Day” being held Thursday, September 14, 2023, with the “Rally Hill Day” reception taking place during the evening of Wednesday, September 13, 2023. This initiative is an opportunity for supporters from the 400 participating organizations to join together to speak with one voice about making NIH a national priority. The ABC is always a proud participant in this vital event, stay tuned for further details!
|
|
The Site Solutions Summit is being held October 6-8, 2023 in Hollywood, Florida. Organized by the Society for Clinical Research Site (SCRS), the Site Solutions Summit provides a unique hub where sites, sponsors, CRO executives, and regulators come together to discuss best practices and ideas while developing strategic partnerships through ideation sessions, workshops, and focus groups. Learn more here.
American Psychological Association (APA) 2023 Annual Meeting is being held May 20-24, 2023 in San Francisco, CA. This year's theme is 'Innovate, Collaborate, Motivate: Charting the future of mental health'. For details and to register, click here.
|
|
The 2023 Mental Health Services Conference, October 12-14, in Washington, D.C., brings together everyone caring for those with mental illness, including psychiatrists, nurse practitioners, primary care physicians, social workers, and more, to collaborate on practical advice to influence systems-level change for their patients. Learn more here.
6th Edition of International Conference on Neurology and Brain Disorders Conference (INBC2023) will be held in Boston, October 19-21, 2023. More information here.
|
|
Sites -- please share your feedback!
Does your site have any trouble enrolling BIPOC individuals in your mental health studies?
|
|
|
Please select the ONE response that most closely aligns with your situation:
|
|
NO: we generally have at least as many BIPOC individuals enrolling.
|
|
|
|
|
SOMETIMES: we make a small effort to make sure we meet diversity goals.
|
|
|
|
|
YES - we struggle to reach BIPOC individuals to enroll in MH studies.
|
|
|
|
|
|
|
Introducing The Association of Diversity in Clinical Trials (AOD)
The AOD will become the first entity to represent industry in an effort to meet new government and regulatory demands in the field of diversity.The mission of the organization is to bring industry leaders together to establish standards and best practices related to improving the representation of diverse participants in clinical trials. This will be achieved through the development, integration, and monitoring of quality and consistent diversity methodology across the research industry.
|
|
Thank you for reading!
If you have questions, comments, or would like to submit an item to be included in an upcoming newsletter, please email erica@thestarr.org.
|
|
The STARR Coalition is a 501(c)(3) nonprofit organization, our Tax ID # is 47-4634007.
|
|
Everything The STARR Coalition does comes from our stakeholders looking to make positive change.
The STARR Coalition | phone: 501-725-8890 | www.thestarr.org
|
|
SHARE, CARE, AND BE KIND. |
|
|
|
|
|
|
