Today, Feb 28th, is Rare Disease Day - a time to both celebrate the resilience of the more than 300 million people around the world with rare diseases, and to accelerate treatments to make their lives better. Clinical research not only develops the treatments for these conditions, but is also often the fastest path to treatment for patients with rare diseases. In this piece, I reflect on my own experiences as a researcher, patient, and now social enterprise founder. After a decade of researching rare diseases, I am grateful that Health Wallet can bring health and hope to rare disease patients by reimagining clinical trial recruitment.

Originally published on <a href="https://www.linkedin.com/pulse/dont-forget-those-rare-diseases-tom-rico-pamukcu" target="_blank" rel="noopener">LinkedIn</a> by <a href="https://www.linkedin.com/in/tompamukcu/" target="_blank" rel="noopener">Tom Rico Pamukcu.</a>
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February 28 is Rare Disease Day, the day set aside to remember those battling diseases for which the medical community has few answers and in which the pharmaceutical industry has limited interest. Over 300 million people around the world are fighting this fight every day, too often with little support.
Even though a disease is rare, it can still be debilitating and even deadly. There are at least 7,000 known diseases classified as rare, and these include one out of five cancers. Many are hereditary.
For those living with rare diseases, the journey towards diagnosis is often long and complex. Symptoms may be similar to those of better-known illnesses, making identifying the true problem difficult. Even when a rare disease has been identified, treatment options are scarce&mdash;over 95% of rare diseases have no approved treatments. Imagine suffering an illness that&rsquo;s making you miserable, keeping you from working or caring for your children, and even threatening your life, and having your doctor tell you, &ldquo;I&rsquo;m sorry, but there&rsquo;s nothing I can do.&rdquo;
Researchers want to help these patients. But too often, factors having nothing to do with the medical viability of possible treatments get in the way.
I come to this issue having seen it as both a clinical researcher and a patient. Most of my career has been spent studying orphan diseases &mdash; conditions so rare that new treatments aren&rsquo;t considered economically viable because the cost of development is too high and the revenue from sales is too low.
At one point in my career, our team discovered a medicine that could potentially treat a rare children&rsquo;s cancer. But the business case just wasn&rsquo;t there -- this cancer was so rare that it wasn&rsquo;t economically viable to conduct the trial. The study was canceled and we never discovered whether the medicine would help these kids.
Sadly, these types of decisions are commonplace in clinical research.
I&rsquo;ve seen the other side of this situation as well, as a patient born with a rare disease. By age 10, I had more major surgeries than birthdays, and clinical trials offered the medicines that helped me through that time.
And yet I was fortunate. I was born at a major research institution with a world-renowned specialist in my condition. Without this, I probably would not be writing this piece today.
Luck and privilege should not be the deciding factors in whether someone can access life-changing clinical research. We must do better. And we can do better.
Today, those researching treatments for rare diseases face steep hurdles, including limited funding and the high cost of developing a new medicine. The result is that too many good medicines never reach patients with rare diseases. Even if a treatment works, the study and hypothesis will fail if researchers don&rsquo;t enroll enough patients to test it. 86% of clinical studies fail to reach their enrollment goals on time, and this disproportionately affects rare disease studies. When recruitment goes poorly, costs balloon rapidly -- delayed research costs organizations up to $8 million each day, and the burden of that expense kills many studies before they even get off the ground.
The real victims of this are the patients who could benefit from participating in the studies, as I did when I was younger, and who could be helped by the new treatments once they&rsquo;re approved. We owe them better.
The success of clinical research, especially for rare diseases, often hinges on recruitment. But the way we do clinical trial recruitment now is slow, cumbersome, labor-intensive and costly &ndash; and has changed far too little even as communications technology has taken massive leaps forward.
If we can reduce the costs and uncertainty involved in producing new treatments, we can dramatically accelerate rare disease research.&nbsp; Simply reducing the cost of recruitment could allow us to effectively double the number of rare disease studies that could be conducted with the same budget, bringing health and hope to many more patients. This means more opportunities to help patients that currently have too few options.
While the problem is complex, the solution is remarkably simple: Make it easier to enroll more patients from all walks of life into clinical trials. This way, we can help more patients with rare diseases get access to more medicines today. In doing so, we also accelerate development of new medicines, creating even more opportunities for these patients tomorrow.
At Health Wallet, building our solution around the needs of patients &ndash; helping them find the appropriate clinical trial for them &ndash; has been a game-changer. Traditional recruitment can be a frustrating process for a patient: Imagine being recruited to a clinical trial only to find out you aren&rsquo;t eligible, and then left to your own devices to find something else.&nbsp;
By helping the patient find the right trial on the first try, patients gain access to therapies much more quickly, and researchers spend less time doing inefficient recruitment and more time advancing medicine. It&rsquo;s a win-win that can expand opportunities both for patients with rare diseases and researchers studying rare diseases.
It&rsquo;s time for the entire research community to get serious about bringing clinical trial recruitment into the 21st century. Fortunately for patients, these new opportunities are starting to become available. If you or someone you know needs help finding a clinical trial, Health Wallet will help find the right trial for you.

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Don't Forget Rare Disease Patients

This "Meet a Researcher" profile features Dr. Eileen Leary, Sleep Scientist & Epidemiologist. This post is part of Health Wallet's ongoing series that provides an opportunity to get to know the people hard at work to bring us the future of medicine. 

This post is part of Health Wallet's ongoing series, "Meet a Researcher," which is an opportunity to get to know the people hard at work to bring us the future of medicine. Each of these profiles spotlights a clinical researcher who we admire and whose work is critical to advancing medical discovery.&nbsp;
To learn more about what clinical trials may be the right options for you, create your own Health Wallet account <a href="https://dashboard.healthwallet.app/register" target="_blank" rel="noopener">here</a>. And to learn more about Health Wallet and our collaborators, sign up for our newsletter <a href="https://www.healthwallet.app/newsletter" target="_blank" rel="noopener">here</a>.&nbsp;
<hr />
<h3>What is your job and how would you describe it?</h3>
My name is Dr. Eileen Leary and I&rsquo;m a sleep scientist &amp; epidemiologist. After spending more than 20 years in academic sleep research, I transitioned to pharma in 2020. Now I lead research studies that improve our understanding of sleep disorders and their treatments.
<h3>Who or what inspired you to enter the field of clinical research?</h3>
I decided when I was 16 that I wanted to work in the field of sleep medicine. It started with an interest in dreams. I kept a dream journal and even went with my mom to a workshop on dream interpretations. 
After majoring in psychology in college, I got a job as a sleep technologist. Working nights got old quickly, so I reached out to Dr. William C. Dement, the Founder and Director of the Stanford Sleep Center, for career advice. I was shocked when the &ldquo;Father of Sleep Medicine&rdquo; not only responded to my email but offered me a position as his Project Manager.
Bill Dement had a major impact on both professionally and personally. Collaborating with a leader in the field both inspired me and taught me a lot. Today I work in sleep medicine because of the tremendous impact sleep has on public health and safety.
<h3>What is one of the most interesting or rewarding projects you've worked on in clinical research?</h3>
My team and I recently conducted a study that used some innovative strategies to be responsive to the needs of patients. We started by listening, and consulted with patients and healthcare providers during the design phase to ensure we were capturing relevant information.&nbsp;
Then we put into practice what we heard. People could participate virtually to ensure we could enroll anyone who qualified, regardless of their location. We also shared the information we were collecting with study participants, giving them four different graphical reports containing their own data that they could share with their doctor. Right now, we&rsquo;re preparing a summary of the results that will be emailed to every participant, posted online, and shared with patient advocacy groups.
<h3>What is one of the greatest challenges you face in clinical research?</h3>
It can be extremely difficult to try new things in clinical research. There&rsquo;s pressure to do things the way they&rsquo;ve always been done, even when older approaches didn&rsquo;t work well and there are better methods available. Usually the barriers relate to short timelines coupled with limited resources. On top of that, many people find change uncomfortable. I think it&rsquo;s important to push against this way of thinking so the field can grow and improve.
<h3>What is something you wish more people knew about your work?</h3>
Some people think the results of studies sponsored by pharmaceutical companies are biased. But regulatory agencies (like the FDA) keep a close eye on what&rsquo;s happening with these studies, so they are carefully conducted to meet high standards of ethics and rigor. As an additional safeguard, clinical studies usually bring in external experts (scientists, doctors, and patients) to make sure the right information is collected.
<h3>When you're having a challenging day, what story or experience keeps you motivated?</h3>
I&rsquo;m really passionate about improving the way research is conducted to ensure we are helping people from all walks of life and empowering patients so they can take an active role in their care.

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Meet a Researcher: Eileen Leary, Sleep Scientist & Epidemiologist 

This "Meet a Researcher" profile features Ayesha Fraser, Regulatory and Quality Management Specialist. This post is part of Health Wallet's ongoing series that provides an opportunity to get to know the people hard at work to bring us the future of medicine. 

This post is part of Health Wallet's ongoing series, "Meet a Researcher," which is an opportunity to get to know the people hard at work to bring us the future of medicine. Each of these profiles spotlights a clinical researcher who we admire and whose work is critical to advancing medical discovery.&nbsp;
To learn more about what clinical trials may be the right options for you, create your own Health Wallet account <a href="https://dashboard.healthwallet.app/register" target="_blank" rel="noopener">here</a>. And to learn more about Health Wallet and our collaborators, sign up for our newsletter <a href="https://www.healthwallet.app/newsletter" target="_blank" rel="noopener">here</a>.&nbsp;
<hr />
<h3>What is your job and how would you describe it?</h3>
My name is Ayesha Fraser and my friends call me Aya. I work on blood and marrow transplantation and cellular therapy trials by leading the trials&rsquo; regulatory affairs and quality management. This means I help researchers comply with research regulations, which can be complex to understand and a lot of work to manage. From HIPAA to Good Clinical Practices, regulations exist to make sure research is done ethically, safely, and to the highest standard of scientific rigor.&nbsp;
<h3>What inspired you to enter the field of clinical research?</h3>
Some of us find our calling and for others, their calling finds them. I am the latter. After working in laboratory research, I took the leap of being a newcomer to clinical research and regulatory affairs. Even though it was challenging, I realized that my skills helped me get up to speed quickly. I&rsquo;ve found a fundamental understanding of medical and biological sciences is helpful, especially the principles of rigor and reproducibility.
Now seven years later, I am still in regulatory affairs, and eager to continue learning and contributing to the evolving research industry.
<h3>What is one of the most interesting or rewarding projects you've worked on in clinical research?</h3>
In my job, I help scientists who are leading clinical trials receive FDA approval to begin their research -- this is the first step of launching a clinical trial. One of my most rewarding projects was working with Dr. Casey Halpern of Penn Medicine to launch a study evaluating whether neuromodulation (the targeted use of a technology that affects nerve activity) could help patients struggling with obesity. These patients had already unsuccessfully tried medication and gastric bypass surgery, so this trial represented a new potential treatment option.
I was inspired by seeing the clinical trial go from paper to reality when I provided regulatory oversight for the trial's first surgery. There, I witnessed the research team&rsquo;s exceptional work and dedication. And I saw just how many people work to make sure patients are safe and cared for, from doctors to administrative staff to regulatory affairs professionals like me. Everyone in clinical research has a role and we could not be successful in improving patients&rsquo; lives without each other. 
<h3>What is one of the greatest challenges you face in clinical research?</h3>
Sometimes people underestimate the amount of effort, time, dedication, and discipline required to conduct clinical research. Because this work can be so difficult and complex, one of my roles is to train clinical researchers on the evolving research landscape so they can make regulatory compliance not just part of their trials but part of the organizational culture itself. Regulatory affairs is not just about paperwork and rules--it&rsquo;s about having a culture that prioritizes understanding and following the applicable regulations. The culture of an organization is its life force; each team member&rsquo;s actions contribute to building and maintaining culture. 
<h3>When you're having a challenging day, what story or experience keeps you motivated?</h3>
I'm motivated by working with exceptional doctors who care for their patients and dedicate their careers to researching treatments that can improve people&rsquo;s lives. Getting new treatments to patients is the product of a huge team effort. I take satisfaction in knowing that my job managing the regulatory side of things gives doctors options for new treatments while ensuring the safety of patients. This inspires me to keep going and continually improve my contributions to advancing clinical research.

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Meet a Researcher: Ayesha Fraser, Regulatory and Quality Management Specialist

Health Wallet CEO Tom Rico Pamukcu explains in the San Francisco Chronicle why more diverse clinical trials will be key to the next generation of clinical research.

Diversity in clinical research is key to the next generation of COVID treatments, explains Health Wallet CEO Tom Rico Pamukcu in the San Francisco Chronicle. Read more below or <a href="https://www.sfchronicle.com/opinion/openforum/article/covid-clinical-drug-trials-17313427.php" target="_blank" rel="noopener">click here</a> to go to the Chronicle.
To learn more about what clinical trials may be the right options for you, create your own Health Wallet account&nbsp;<a class="chakra-link css-d9wyap" href="https://dashboard.healthwallet.app/register" target="_blank" rel="noopener">here</a>. And to learn more about Health Wallet and our collaborators, sign up for our newsletter&nbsp;<a class="chakra-link css-d9wyap" href="https://www.healthwallet.app/newsletter" target="_blank" rel="noopener">here</a>.&nbsp;
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<h2>COVID keeps evolving. Clinical drug trials need to evolve along with it</h2>
Alpha. Beta. Delta. Omicron. BA.5
The list of COVID variants and subvariants continues to grow. And the threat of prolonged symptoms from long COVID becomes clearer every day. Our best defense &mdash; research to produce new and effective treatments &mdash; must keep advancing. But our clinical research system has a problem, and the Food and Drug Administration is only now making some headway in trying to fix it.
Clinical trials are how we know vaccines and medicines work and that they&rsquo;re safe. If you&rsquo;ve ever taken a medicine or a vaccine, you&rsquo;ve benefited from these clinical trials.
But some people benefit more than others.
The best way to ensure that a drug is safe to take is to create clinical studies that test its effects on the different types of people who will eventually take it. For most drugs, like those that would treat COVID, that means essentially the whole population &mdash; broadly representing every age, gender, racial or ethnic background.
But the people who enroll in clinical trials often don&rsquo;t look like our population; they&rsquo;re disproportionately white and male, and people over age 65 are frequently underrepresented. This has been noted in&nbsp;<a href="https://ascopubs.org/doi/full/10.1200/JOP.2017.025288">cancer drug trials</a>&nbsp;and&nbsp;<a href="https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2776562">vaccine studies,</a>&nbsp;among many others.
That&rsquo;s a problem.
Drugs and vaccines sometimes have different effects in different groups.&nbsp;<a href="https://www.sciencedirect.com/science/article/abs/pii/S1543594604000303">Older people,</a>&nbsp;for example, process drugs differently than younger ones. Women process many drugs differently than men, leading to&nbsp;<a href="https://bsd.biomedcentral.com/articles/10.1186/s13293-020-00308-5">higher rates of side effects</a>&nbsp;and safety concerns. And we know that differences in body weight between men and women don&rsquo;t explain those findings.
There can also be racial differences in outcomes as well.
For example, a common blood thinner used to reduce the risk of heart attack or stroke was belatedly found to be ineffective for many Asians and Pacific Islanders&nbsp;<a href="https://jamanetwork.com/journals/jama/article-abstract/186798">due to a particular gene</a>&nbsp;that is more common in some populations. But this disparity wasn&rsquo;t discovered until the drug went to market because Asian American and Pacific Islander patients weren&rsquo;t adequately represented in the clinical research.
Sometimes a drug will work better or be safer in one group than in others. For example, Black patients taking the cholesterol-lowering drug simvastatin had a&nbsp;<a href="https://pubmed.ncbi.nlm.nih.gov/34834577/">lower rate of side effects</a>&nbsp;than white individuals taking the drug.
Failure to study diverse populations means we don&rsquo;t know everything we could about new medical products when they&rsquo;re approved. But that&rsquo;s not all. For people with life-threatening conditions like hard-to-treat forms of cancer, enrolling in a drug trial could be their only chance at life-saving treatment.
Everyone should have a fair shot at these opportunities.
While these problems exist across the field of clinical research, they have particularly worrisome implications for COVID research.
First, with a new infectious disease &mdash; and SARS-CoV-2 is still pretty new &mdash; clinical trials can impact the whole population. The first people to receive the COVID vaccine through clinical trials went back into their communities and helped stop the spread. But those initial vaccine trial participants were disproportionately white and male. Meanwhile, people of color were disproportionately exposed to the virus, with many serving as essential workers and living in households that could not easily quarantine sick family members.
All of this contributed to COVID-19 taking a disproportionate toll on communities of color.
Unless we make changes now, we are on track to continue these disparities in the next generation of COVID research, much of which will focus on long COVID. We now know that for about&nbsp;<a href="https://www.cdc.gov/mmwr/volumes/71/wr/mm7121e1.htm">1 in 5 COVID patients,</a>&nbsp;the initial infection is just the start, and that the virus continues damaging other systems, with effects persisting long after that first infection.
We have just started to study long COVID, and we urgently need to avoid repeating the same mistakes of those early studies. In addition to implications for communities of color, some research suggests that many long COVID symptoms&nbsp;<a href="https://www.tandfonline.com/doi/full/10.1080/03007995.2022.2081454">disproportionately impact women.</a>
Disproportionately white, male studies won&rsquo;t cut it.
Why are some groups chronically underrepresented in such vital studies? Some of it, sadly, seems to stem from explicit or implicit bias among doctors and researchers. In&nbsp;<a href="https://www.statnews.com/2022/06/06/black-cancer-patients-not-offered-access-to-clinical-trials/">one recent survey,</a>&nbsp;Black cancer patients said they were interested in clinical trials but were only rarely offered the opportunity to participate.
Sometimes, it&rsquo;s an outreach failure &mdash; research teams simply not recruiting in ways that are likely to reach women, older people or racial and ethnic minorities.
In April, the FDA issued a&nbsp;<a href="https://www.fda.gov/media/157635/download">draft guidance</a>&nbsp;for industry and others sponsoring clinical trials urging them to develop a plan to promote racial and ethnic diversity in their studies. The guidance, culminating a process that began six years ago, takes a critical first step by asking trial sponsors to put their diversity plans in writing.
That&rsquo;s important because it can push researchers to put effort and thought into diversifying their patient pool. But the draft guidance focuses only on race and ethnicity, not age or gender
We can&rsquo;t wait for the FDA to fix this, though it should certainly finalize and toughen up its guidelines.&nbsp;<a href="https://www.congress.gov/bill/117th-congress/house-bill/7667">Legislation</a>&nbsp;has been introduced in Congress that may help, but its fate is uncertain.
Everyone involved &mdash; drug companies, academic institutions, researchers &mdash; must recognize the seriousness of this problem. The next COVID variant won&rsquo;t wait for us to get this right.
Tom Rico Pamukcu is a clinical researcher and the founder and CEO of&nbsp;<a href="https://urldefense.com/v3/__https:/www.healthwallet.app/__;!!Ivohdkk!gRitTaWMc0jGckPXhVO9vsNjiT0jWAHC-JkREq_t3R0tIMAZVq9Rvl_mJwaHAG28cNBZJBAjwYCReW0NiO1ruyg%24">Health Wallet,</a>&nbsp;a South San Francisco company connecting prospective clinical study participants and researchers.

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Health Wallet CEO in SF Chronicle: Clinical drug trials need to evolve faster than COVID

This "Meet a Researcher" profile features Dr. Jeaneen Wallis, GCP Consultant. This post is part of Health Wallet's ongoing series that provides an opportunity to get to know the people hard at work to bring us the future of medicine. 

This post is part of Health Wallet's ongoing series, "Meet a Researcher," which is an opportunity to get to know the people hard at work to bring us the future of medicine. Each of these profiles spotlights a clinical researcher who we admire and whose work is critical to advancing medical discovery.&nbsp;
To learn more about what clinical trials may be the right options for you, create your own Health Wallet account <a href="https://dashboard.healthwallet.app/register" target="_blank" rel="noopener">here</a>. And to learn more about Health Wallet and our collaborators, sign up for our newsletter <a href="https://www.healthwallet.app/newsletter" target="_blank" rel="noopener">here</a>.&nbsp;
<hr />
<h3>What is your job and how would you describe it?</h3>
I&rsquo;m Dr. Jeaneen Wallis and I&rsquo;m a consultant who specializes in Good Clinical Practice Quality Assurance, also called GCP. GCP is our field&rsquo;s guidance for how to safely and ethically conduct clinical research. I joke and say I'm a "GCP fixer".
People tend to need my help when it&rsquo;s time to send clinical research reports to the FDA to approve a new drug or therapy. At that point, research teams have often already spent years understanding the science that could lead to a new medicine. But they don&rsquo;t always know how to get their documentation up to speed for the FDA. That&rsquo;s where I come in.
<h3>What inspired you to enter the field of clinical research?</h3>
Early on, I didn&rsquo;t know about the field of clinical research or that this was a career I could have. I was always interested in science, but I thought that meant I had to become a doctor. Then in college, I got my degree in Science, Technology and Society. I realized that I wanted to work in the space between science and ethics and for me, that means protecting people from bad science.
Today, I want to let young people know, there are jobs for you in the clinical research field and the work can be very fulfilling. 
<h3>What is one of the most interesting or rewarding projects you've worked on in clinical research?</h3>
A highlight for me was seeing an ad on TV for an arthritis medicine I helped develop. It was so satisfying because developing a new medicine takes a long time -- in this case, I had spent years poring through x-rays, other imaging data and doing quality checks to make sure we were doing good science.&nbsp;
Some people in the field never get that moment. A lot of us can do our jobs and do them well, and never see a product go to market. So it was special for&nbsp; me to turn on the TV and see a famous athlete advertising a medicine I helped create.
<h3>What does success in clinical research mean to you?</h3>
Success in clinical research to me means that the science is applied ethically to improve the quality of life of people in need. This work is more than just a paycheck. I ask myself, is what I&rsquo;m doing helping people? Am I applying my skills ethically? That&rsquo;s the whole point.
<h3>What is something you wish more people knew about your work?</h3>
Sometimes the perception of &ldquo;big pharma&rdquo; can negatively affect how people see clinical research. I wish more people knew that so many of us are in our jobs to do good science and keep people healthy. I&rsquo;m a nice person! I also wish people knew about &ldquo;tiny pharma,&rdquo; where teams work extra hard to keep medicine development safe and on time. Doesn&rsquo;t matter if it&rsquo;s 20 people or 2,000 running a trial -- the regulations and expectations are the same. I love helping the little guy.
<h3>When you're having a challenging day, what story or experience keeps you motivated?</h3>
I think of my grandmother, who almost died in a hospital during childbirth and had serious complications afterward. Sadly her story is not unusual. A lot of Black women today have higher rates of birth complications and maternal mortality. These are issues that wear you down over time. It&rsquo;s what motivates me to stay in the game and contribute back, to make sure that medicine is ethical and of the highest quality. I am motivated to do what I do to improve medical outcomes and quality of treatment for all people of color.&nbsp;

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Meet a Researcher: Jeaneen Wallis, Good Clinical Practice Consultant

This "Meet a Researcher" profile features Yael Symes, Senior Medical Writer. This post is part of Health Wallet's ongoing series that provides an opportunity to get to know the people hard at work to bring us the future of medicine.

This post is part of Health Wallet's ongoing series, "Meet a Researcher," which is an opportunity to get to know the people hard at work to bring us the future of medicine. Each of these profiles spotlights a clinical researcher who we admire and whose work is critical to advancing medical discovery.&nbsp;
To learn what clinical trials may be right for you, create your own Health Wallet account <a href="https://dashboard.healthwallet.app/register" target="_blank" rel="noopener">here</a>. To stay informed from Health Wallet, sign up for our newsletter <a href="https://www.healthwallet.app/newsletter" target="_blank" rel="noopener">here</a>.&nbsp;
<hr />
<h3>What is your job and how would you describe it?</h3>
I'm a Senior Medical Writer. I help design clinical studies and report the results to health authorities like the Food and Drug Administration (FDA).
<h3>What inspired you to enter the field of clinical research?</h3>
My doctoral training focused on improving the health and quality of life of cancer survivors. I quickly learned that some of the most life-saving and quality-of-life-enhancing cancer treatments are found in clinical trials and that not everyone has access to them. Historically, wealthy White men are the ones who have the most access to and benefit from oncology clinical trials. I felt inspired to bring my public health and patient advocacy background to clinical research.
<h3>What is one of the most interesting or rewarding projects you've worked on in clinical research?</h3>
The most rewarding project I&rsquo;ve worked on in clinical research was a multi-faceted effort I led to improve diversity in clinical research, both at my workplace and in the industry at large. I researched the problem of a lack of representation across race, ethnicity, and gender in clinical research and solutions to combat this problem. I presented a <a href="https://drive.google.com/file/d/1zhrPtzwPmm6rgCeN47uYTKt6tZVTR_72/view">webinar</a> and co-wrote a peer-reviewed <a href="https://pubmed.ncbi.nlm.nih.gov/31608451/">publication</a> on how to increase diversity in clinical studies.
<h3>What does success in clinical research mean to you?</h3>
To me, success in clinical research means that everyone has access to clinical trials, no matter their race, ethnicity, gender, sexual orientation, age, disability, or income level. It means that patients and their caregivers have a say in the design of clinical studies. Success means that we&rsquo;re working intentionally to reach diverse populations that reflect the burden of the disease; this is not something that will just happen by chance. We need to know if medical products are safe and effective in all populations.
<h3>What is something you wish more people knew about your work?</h3>
I wish that more people from diverse backgrounds knew about careers in clinical research. You don&rsquo;t need to be a bench scientist to do this kind of work. We need a diverse workforce to foster patient empowerment and make sure that our studies are inclusive. I have no doubt that more diverse perspectives will lead to better science.
<h3>When you're having a challenging day, what story or experience keeps you motivated?</h3>
A friend of mine &ndash; a young mom at the time&mdash;was diagnosed with stage 4 cancer and given a few months to live. She participated in a clinical trial that tested a novel kind of cancer therapy and she is now over a decade cancer-free. I worked on several studies that tested the medical product that saved her life. The treatments being investigated in clinical trials are incredible, and I feel proud to have a part in getting these life-saving treatments to those who need them.

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Meet a Researcher: Yael Symes, Senior Medical Writer

Health Wallet CEO Tom Rico Pamukcu has been awarded a Roddenberry Fellowship, and will be joining a cohort of social entrepreneurs across the country. UC Santa Cruz, where Tom is an instructor, published the following spotlight on Tom and his work with Health Wallet.

We are proud to announce that Health Wallet founder and CEO Tom Rico Pamukcu has been awarded a 2022-2023 <a href="https://roddenberryfoundation.org/blog/fellow/tom-rico-pamukcu/" target="_blank" rel="noopener">Roddenberry Fellowship</a> to support his work leading Health Wallet. He will be joining a cohort of social entrepreneurs across the country who are working toward a more just and fair future. University of California, Santa Cruz, where Tom is an instructor, published the following <a href="https://www.linkedin.com/pulse/instructor-earns-roddenberry-fellowship-/" target="_blank" rel="noopener">spotlight</a> on Tom and the Roddenberry award.
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<h3 class="reader-text-block__heading2">Clinical trials instructor recognized for healthcare equity work</h3>
Clinical research is only as good as its data which is why Silicon Valley researcher&nbsp;<a href="https://www.ucsc-extension.edu/about/instructors/thomas-r-pamukcu/">Tom Rico Pamukcu</a>&nbsp;is working to make sure more people have the opportunity to participate in the clinical trials they need.
&ldquo;The big picture goal is to make it so that any person, regardless of who they are or where they live, have equal and equitable access to clinical research,&rdquo; says Pamukcu who teaches <a href="https://www.ucsc-extension.edu/courses/data-privacy-and-security-for-healthcare-and-biosciences/">Data Privacy and Security for Healthcare and Biosciences</a> at <a href="https://www.ucsc-extension.edu/">UCSC Silicon Valley Extension</a>.
Pamukcu recently launched <a href="https://www.healthwallet.app/">HealthWallet.app</a>, a startup that inverts the traditional clinical trial outreach process by bringing clinical trial information to communities historically excluded from accessing important research.
&ldquo;When we&rsquo;re creating medicines of the future, we want to make sure they&rsquo;re safe and effective for all people,&rdquo; Pamukcu says.&nbsp;
<h3 class="reader-text-block__heading2">Equity in Clinical Trials</h3>
Clinical trials, however,&nbsp;have often focused on the people who have the best access to healthcare&mdash;white men. The result is clinical trial data is not always representative of most of the patient population it is intended to help.
<a href="https://roddenberryfoundation.org/our-work/roddenberry-fellowship/fellows/2022/">The Roddenberry Foundation</a>&nbsp;recently awarded Pamukcu a fellowship for his work in healthcare equity. It comes with a $50,000 grant to help him reach out to partners in low-income clinics across the U.S.
&ldquo;I&rsquo;m really excited to receive the Rodenberry award especially among a cohort of other inspiring leaders,&rdquo; Pamukcu says. &ldquo;All of us are approaching our different fields with the intention of really improving the status quo and addressing inequities. We&rsquo;re making meaningful change in domains where it&rsquo;s desperately needed.&rdquo;
<h3 class="reader-text-block__heading2">Improving Access to Clinical Trials</h3>
The idea behind HealthWallet.app is to connect people to the more than 24,000 clinical trials underway in the U.S. The free app is available to everyone looking to find clinical trial options.
The HealthWallet.app solves several problems. It provides willing, eligible participants for clinical trials&mdash;a huge problem for clinicians who often struggle to find people who meet stringent trial requirements. It also improves the data pool by linking trials with people who are representative of a broader, more diverse population.
<h3 class="reader-text-block__heading2">Making the Pie Bigger</h3>
&ldquo;Rather than clinical trials reaching out to patients to see if they&rsquo;re eligible, we&rsquo;re asking the individual to reach out to researchers,&rdquo; Pamukcu says. &ldquo;We have the best tool to find clinical trials that there is. What we&rsquo;re selling to researchers is the opportunity to have this entirely new channel of participants come knocking on the lab door.&rdquo;
&ldquo;Instead of researchers competing to get a bigger piece of the pie, we&rsquo;re making the pie bigger,&rdquo; Pamukcu says.
Technology isn&rsquo;t the solution, Pamukcu says.&nbsp;
&ldquo;It&rsquo;s a tool. Obviously, long-term systemic barriers are not going to be solved solely by a cool, new app. But, we&rsquo;re building technology to empower new patients like never before, which is a first step towards that change.&rdquo;
Tom Pamukcu teaches&nbsp;<a href="https://www.ucsc-extension.edu/courses/data-privacy-and-security-for-healthcare-and-biosciences/">Data Privacy and Security for Healthcare and Biosciences</a>&nbsp;starting Nov. 16. It is a course in the&nbsp;<a href="https://www.ucsc-extension.edu/certificates/clinical-trials-design-and-management/">UCSC Silicon Valley Clinical Trials certificate program</a>.

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