Responsible Technology Youth Power Fund – Good for Media and Generation Patient

Episode 111

Part 7 out of 13 in this Series

Introduction

The Non Profit organisations which are looking at today, is Generation Patient and Good For Media.

Good for MEdia

#GoodforMEdia is a peer mentoring campaign for older teens and young adults to share their personal stories, insights and strategies with younger teens and tweens to support their healthy engagement with technology and social media.

Young people are gaining access to technology and social media at younger and younger ages. This opens up amazing new ways to play, connect and create. But most of these platforms were not created with our best interests in mind and are filled with potential pitfalls and dilemmas that can threaten our mental health and wellbeing. Many of us lack adequate guidance from the adults in our lives to fully understand the risks and make informed choices.

We believe in the power of peers to influence and educate each other in positive ways; and that some of the best people to help us navigate social media effectively are those that can relate to our daily experiences because they have been through it themselves.

GoodforMEdia Spotlight:

As the new school year begins, parents may be wondering how to help teens protect their mental health as they engage with peers on social media.

Young people can benefit from friendships formed online, especially if they feel marginalized because of their racial, gender or sexual identity, and they can hear positive messages about those identities from friends they make on social media, according to a recent U.S. surgeon general’s advisory.

But research also documents a variety of mental health risks for young social media users, the advisory says, such as increased anxiety, depression and sleep disruption, more struggles with body image and self-esteem, and exposure to cyberbullying or hate-based content.

Stanford Medicine’s Vicki Harrison, program director at the Stanford Center for Youth Mental Health and Wellbeing, spoke about the advisory and how parents can guide their teens toward healthier social media use.

Why are teenagers more vulnerable than adults to mental health challenges stemming from social media use?

One of the main goals of adolescence is defining your identity. Young people seek authenticity, acceptance and validation, so they are really attuned to all the cues of their peer environment.

Social media can be seen as a proxy for a peer environment, but it’s full of social comparisons that are magnified and distorted by algorithms and paid content. Also, social media is often a highlights reel: People post the best versions of themselves. There’s definitely a sense that everybody’s got a better vacation, a better social life, a better body.

I work with young people through the GoodforMEdia project at our center who say that they have to brace themselves before scrolling, to defend themselves against messages that chip away at their self-esteem. Tweens and younger teenagers sometimes have difficultly understanding the motives behind social media content. Or, they may have trouble discerning fact from misinformation. That’s easier when you’re older and have more life experience and critical thinking skills.

Another problem is that social media posts can create a lasting record. If you’re typing or taking pictures of something potentially embarrassing, it’s not just a fleeting conversation; it’s something that could be misconstrued later or could come back to haunt you.

We have also created a culture where we’re expected to be instantly available. For adolescents, there can be an expectation that they respond to friends right away. That adds a layer of pressure that isn’t helpful or feasible. It doesn’t allow time to process or reflect on experiences or conversations.

What conversations should parents have with their children about social media use? What advice should they give or limits should they set to help their teens?

I advise parents to delay or limit access to social media as long as they feel they can. The longer your brain develops and your life experiences stack up before you begin using social media, the better outcomes you’re going to have. I also advise that teens gain access to social media gradually, just like other things that they get more responsibility for as they mature.

It’s a good idea to develop a family media plan. It doesn’t have to be formal; it could be a discussion that answers key questions for your teens: Are there rules for when you’re going to have access to your device? Who is paying for the device? What should you not do on your device? Where can you go for help if you get into trouble? Having those conversations up front is pretty important.

Also, talk about the intention behind having a device. Parents may be rightfully concerned about respecting their teen’s privacy, but it’s normal and expected that you ask questions about what they are doing online. Just as you want to support them with peer relationship dynamics at school, you should have periodic conversations with your kids about phone and social media use because there’s a lot to navigate in those spaces.

The U.S. surgeon general’s recent advisory includes advice for designers of social media platforms to intentionally embed safeguards for young people. How do you think that could best be accomplished?

I would like to see more involvement of young people in the design of the social media platforms they use. To that end, our team, in collaboration with Stanford University’s design school recently held a workshop on social media and youth mental health in which local high school and college students participated as panel speakers and contributors.

We discussed California’s Age-Appropriate Design Code Act, which will be enacted in 2024. The law calls for social media platforms to protect young people by verifying their ages, having stricter privacy settings enabled by default, minimizing tracking, and more. Other states are considering similar legislation.

The big question now is how this law will be put into practice. For instance, how will age verification happen, and will the voices of young people be considered in developing those regulations? Do you want to have someone scan your face to verify your age, do you want your parent to attest to your birth date, or do you want a third-party vendor to verify that? And what are the potential privacy impacts of these options?

One thing that came up was the tension between not limiting the social media platforms’ freedom to share content while also protecting people on platforms. We heard from a group of eloquent young people who feel that, when it comes to most social media platforms, since algorithms already manipulate the content to create a curated experience, their health and safety should be prioritized over the platforms’ free speech or profit.

What myths do you, as an expert in the field, encounter about young people’s use of social media?

That adolescents want to do whatever risky things they can; that they want to explore the depths of the internet, no matter how horrible. The reality is that young people generally want a good experience online.

Many teens see social media in a nuanced way. Some feel like it’s a necessary evil, and they have to be on because all their friends are there. They say they lose social currency if they aren’t participating, but they don’t like a lot of what they encounter.

I have heard from young girls that they don’t want to see ads or posts about fitness and losing weight. They don’t want that pressure wearing on them; they just want to have fun and connect with their friends. Therefore they are open to adults trying to step in, to put in place common-sense, supportive, mutually beneficial guard rails.

We’ve talked a lot about the drawbacks of social media. Are there ways it can help young people’s mental health?

A lot of young people say they look to social media to relieve stress, or to laugh. They like to watch videos that make them smile, or that they can laugh about with their friends. Social media can also facilitate connecting with people who you feel are like-minded, who “get” you and share your interests. That’s really powerful for young people, especially if they feel like they’re not always accepted in their offline lives.

Article Featured on August 22^nd 2023 on the Stanford Medicine for Childrens Health site.

Plenty of examples of various stories on the Stanford site. This is just one of many. All the summaries and images relating to an article are listed under the heading Under the Spotlight Tab on the website. When you click on the links, it takes you to Stanford Medicine website, and where you will see this story and many more in detail.

Good for Media Stories

There are again many stories of interest. All with a summary, like the previous section, and then a link to a main site with a collaborating organisation.

GoodforMEdia curriculum

Our curriculum is a planning and information resource created by youth to support the mental health and wellbeing of young people in their relationship with social media and technology.

Our curriculum shares with the audience evidence-based information, insights into our lived experiences and perspectives, as well as strategies for a healthier interaction with social media.

We created this curriculum with the goal of empowering young people to draw upon their direct experiences to create their own ideas and solutions for navigating social media in a healthy, productive, and purposeful way.

The Team

Our Team

Hi there!

Our names are Emily, Zoe, Khoa-Nathan, Sonia, Edward, Zenia, Katy, Vienna, Audrey, Chloe, Jimin, and Luci.

We have partnered up with Stanford Psychiatry’s Center for Youth Mental Health and Wellbeing to create #GoodforMEdia. The Team

We created this peer mentoring campaign to tackle the positive and negative aspects of social media. These days, kids are receiving cell phones and social media accounts much earlier than previous generations. We hope that #GoodforMEdia can support healthy social media engagement as well as be real about what we all struggle with.

The Team

Zoe (she/they) is currently in her last year as a Neurobiology major with a minor in Health Care Social Issues at UC San Diego. She is passionate about social justice and advocacy–especially surrounding mental health. Zoe got involved with #goodforMEdia because so many youth use social media, and she believes it is important that they have strategies and ideas to ensure that they can use it in a way that has a positive impact on their mental health.

Khoa Nathan (he/they) is a college freshman dedicated to mental health advocacy and community involvement. Khoa Nathan hopes to use his lived experiences to help other youth and empower them to be involved in social justice. He views social media as not just a challenge for this generation, but also a tool for expression and storytelling to make the word a better place.

Emily (she/her) is a freshman at Harvard University and is currently undeclared. She is involved with #GoodforMEdia because she wants to decrease the stigma around discussing mental health. Growing up in the Bay Area, she has become acutely aware of how much people — specifically teens and young people — need a safe space to discuss, share, and learn more about this subject. She tries to use social media in a positive way to enhance her mental health and wellness, and wants to help other kids navigate the balance between social media and overall well being

Sonia (she/her) is a senior in high school who loves learning about mental health and how to support her peers. Although she has witnessed positive and negative effects of social media, she ultimately believes that social media has the potential to help youth build community and engage with new ideas. She enjoys working with #GoodforMEdia to promote open conversations about mental health and give youth tools to mindfully interact with social media on their own terms

Zenia (she/her) is a freshman in high school who is passionate about mental health and helping the people around her. She believes that it is very important for people to connect with others and share their stories. A tool to achieve this is social media, but unfortunately using it can have negative effects on one’s day to day life as well. Her hope is that with #GoodforMedia youth will be able to use media positively and have a platform to discuss mental health.

Edward (he/him) is a junior in high school who sees how social media and pop culture can be major players in teens’ self-image. Living in an age where social media equals self-validation, Edward sees how social media can both degrade and build up someone’s confidence and body security, while also being a space to have open dialogue where youth have traditionally not been able to contrib. He hopes that social media will evolve into a space where people of all walks of life feel comfortable and compelled to share their authentic self to the world.

Chloe (she/her) is a sophomore in high school who is passionate about discussing and reducing stigma around mental health. Through personal experience, she understands how hard it can be to navigate the digital world, but also believes social media can be an incredible tool for fostering meaningful connections and self-expression. She got involved with #GoodforMEdia to help other youth engage with social media in a balanced way that ultimately benefits their mental health.

Jimin (she/her) is a high school senior attending a U.S. online school but residing in South Korea. With her passion for youth mental health and technology reform, she has been involved in advocacy with various youth-led organizations. She believes in the power of youth engagement and hopes to create a social media space with mindful action and consumption. As social media is a double-sided sword, we should work collectively towards a better future with social media.

Luci is currently a junior at Carlmont High School in Belmont, CA. She is planning on majoring in psychology and is incredibly passionate about mental health awareness. She strongly believes and wants to promote a good relationship between social media and mental health, especially for those younger generations who are becoming more involved in social media platforms. She has seen firsthand the possible negative effects of social media and believes it’s important to spread positivity throughout these platforms

Katy (she/her) is a freshman in high school that is passionate about mental health. She hopes to use her experiences to spread awareness about the connections between mental health and social media. Katy believes that when used suitably, social media brings positive things to the lives of youth by providing platforms for connection and advocacy. She is excited to work with #GoodforMEdia to provide tools that benefit youth social media usage

Vienna (she/her) is currently a freshman in high school. She is passionate about mental health awareness and advocacy, and is particularly interested in the intersection between mental health and social media. Vienna strives to recognize and understand the positive and negative implications of social media platforms on mental health. Since social media is a significant part of the lives of younger generations, Vienna sees #GoodforMEdia as a vehicle to help promote the good parts of social media and find ways to combat the negative pieces.

Audrey (she/her) is a junior in high school from the Bay Area, California. She hopes to combine her unique perspective on technology, especially algorithmic biases, from her technology background to make social media a safer place for teens. With her mental health advocacy, Audrey hopes to have conversations with youth about imposter syndrome and self worth. She also coded a platform named Affective Cookies, which inspires users to improve their relationships with mental health through inclusivity and empathy.

Vicki (she/her) is Program Director of the Center for Youth Mental Health & Wellbeing within Stanford’s Department of Psychiatry and Behavioral Sciences. She has over twenty years of experience working within the public health, education and mental health sectors developing and managing innovative, community-based programs at the local, state, national and international levels. At the Center, she develops and directs a broad portfolio of projects promoting wellbeing, early intervention and increased access to mental health services, particularly for young people ages 12-25. She is leading the technical assistance team implementing allcove – a first of its kind integrated youth mental health model in the U.S.; as well as building a national Media and Mental Health Initiative, partnering with the media, mental health and technology sectors to enhance the positive impact of media on youth mental health and wellbeing.

Marilyn (she/her) is the Youth Outreach Coordinator at the Stanford Center for Youth Mental Health and Wellbeing. She has spent the past 5 years working in youth development alongside under-resourced youth communities in the Bay Area. At the Center, Marilyn supports our youth development and peer to peer programs, among them #GoodforMEdia. As an adult ally in this space, Marilyn coordinates upcoming projects, community engagement opportunities and peer to peer collaborations with our youth advisors. Through her time in this field, she’s learned that creating spaces for youth to lead is key.

Recent research about media use and adolescent mental health:

Social Media and Youth: Findings and Recommendations from an Investigation into Teen Experiences
Digital Health Practices, Social Media Use, and Mental Well-Being Among Teens and Young Adults in the U.S
What do others’ reactions to body posting on Instagram tell us? The effects of social media comments on viewers’ body image perception
Abuse and harassment driving girls off Facebook, Instagram, Twitter
Is social media screen time really associated with poor adolescent mental health? A time use diary study
The influence of online images on self-harm: A qualitative study of young people aged 16–24
Social Media and Youth Wellbeing: What We Know and Where We Can Go
Teens Social Media Habits and Experiences
Tweens, Teens, Tech and Mental Health: Coming of Age in an Increasingly Digital, Uncertain, and Unequal World

Generation Patient

In January 2022, we changed our name from the Health Advocacy Summit to Generation Patient. This marked a pivotal point in our growth, as the Health Advocacy Summit was a name created during high school to signify our in-person events in just Indiana at the time. We soon grew to host events in a variety of states, including Texas, North Carolina, and California. But when we were forced to go virtual, it culminated in an opportunity to expand our impact. With that, came a necessary name change to showcase how our impact evolved from events to the extension of programs and meetings. We hope you can check out the below graphic to see some ways we have organized

What We Do

Generation Patient facilitates events, online programs, and advocacy initiatives for young adults living with chronic and rare conditions to ensure that they have the opportunities and resources to thrive.

Values

Our organization focuses on peer support, advocacy, and access to educational information and resources as fundamental pathways to empowerment.

A Note from the Founder of Generation Patient

Generation Patient was created out of my own experience living with severe ulcerative colitis since the age of six.

I was extremely ill for the majority of my childhood and, because of the severity of my disease, I was isolated from society for nearly five years during a crucial stage in my development. At 14, my large intestine was removed, followed by several other surgeries conducted in an attempt to give me a better quality of life. By my junior year of high school, I was finally able to go back to school full-time. Unfortunately, a chronic disease is exactly that –chronic– and while my condition is not as severe as it once was; it has had lasting effects on my childhood and my life as a young adult.

Your young adulthood is supposed to be the “prime” of your life. The time to figure out who you are and the person you want to become. But it isn’t easy to form any kind of identity, to socialize, or to take advantage of all the opportunities that life has to offer when you’re sick and coping with the physical and emotional scars of a chronic illness. My story is long and intersectional, as are the stories of millions of other young adults living with chronic diseases, but there is monumental hope in coming together.

When I created the Health Advocacy Summit (now Generation Patient) as a freshman in college, I did so as a way to heal and connect with my Indiana community. I did not realize the impact we would have across the country and beyond. At Generation Patient, our goal is to build a sustainable movement that will empower the voices of young adults living with chronic conditions and ensure that they are given the opportunities and resources they need to thrive.

Thank you for your time to view our website and we hope you will join our community. Please don’t hesitate to reach out to us to become a supporter, volunteer, or simply share your story.

Sincerely,

Sneha Dave, Founder & Executive Director

Sneha Dave

Founder & Executive Director

Sneha graduated from Indiana University in May 2020 where she majored in chronic illness advocacy as well as journalism. She created the Generation Patient and its program the Crohn’s and Colitis Young Adults Network (CCYAN) to create support systems for adolescents and young adults with chronic conditions across the U.S. and internationally. She is proud to work with a team composed entirely of young adults with chronic medical disabilities and to keep Generation Patient transparent and independent from the pharmaceutical and insurance industry.

Sneha has completed an undergraduate research fellowship in health policy at Harvard T.H. Chan School of Public Health. She has also interned at numerous places such as Pfizer Global Headquarters in health economics and outcomes research for Inflammation and Immunology. Sneha has spoken on Capitol Hill, featured nationally on C-SPAN, and is a past contributor for U.S. News and World Report. She has served on the Democratic National Committee Disability Policy Subcommittee and she is part of the Midwest Comparative Effectiveness Public Advisory Council, an independent appraisal committee of the Institute for Clinical and Economic Review. Sneha also serves on the patient engagement collaborative for the FDA. She was previously a national policy fellow at RespectAbility and now serves as the youngest director on the board for the national nonprofit. Sneha was awarded two academic fellowships with the Association of Health Care Journalists. For her work, Sneha was selected as one of the most influential teenagers in 2018 by the We Are Family Foundation and she was been recognized as an American Association of People with Disabilities Emerging Leader in 2020.

Recent Works:
U.S. News & World Report — Articles by Sneha Dave
This Is What It’s Like To Live With Ulcerative Colitis
Don’t Forget Us! Young Adults with Invisible Illness – Experts by Experience
Pitfalls Journalists Should Avoid When Writing About People With Disabilities
Managing This Invisible Disability in College — Pg. 70

Sydney Reed

Co-Founder & Operations Director

Sydney Reed is a patient advocate based in Northern California. As a teenager, Sydney was diagnosed with a rare autoimmune disease called juvenile dermatomyositis. She would later develop overlapping and secondary conditions such as lupus, Sjogren’s syndrome, and postural orthostatic tachycardia syndrome (POTS). You can read more about Sydney’s medical journey in her article, “How Doctor-Delayed and Missed Diagnoses Harm Patients With Chronic and Rare Illnesses.”

As an undergraduate, Sydney focused her studies on humanitarian and human rights law and participated in advocacy efforts against human trafficking and violence against women. In 2016, she earned her bachelor’s degree in political science with a concentration in international relations as well as an associate degree in social and behavioral science.

Sydney is currently an ambassador for the Chronic Disease Coalition and a young adult representative for the Rare Disease Legislative Advocates. In addition to her advocacy work, Sydney is a contemporary artist and digital illustrator who uses mixed media to create pieces that reflect her experiences.

Cade Johnson

(No image)

Administrative and Program Assistant

Cade Johnson is a writer and researcher based in Philadelphia. They bring almost ten years of administrative and organizational experience to the team, as well as both lived experience with chronic illness and academic expertise in the study of disability. After earning a bachelor’s degree from Smith College with a double major in Film Studies and History, they continued to Central European University (CEU) for a master’s in Gender Studies. At CEU, they wrote an honors-awarded thesis on disability, trauma, and feminist ethics, as well as completing extensive coursework on bioethics and history of medicine.

Julia Bartow

Design and Program Coordinator

Julia Bartow is a 23-year-old college student from Boston, MA. She is studying at Bentley University and majoring in Creative Industries with a minor in Psychology. Julia lives with multiple chronic and rare diseases and conditions. She understands just how difficult it can be to live with serious illness as a young adult, and the challenges of advocating for your needs from a young age, which is why she has chosen to use her artistic talent to help spread awareness.

Gabrielle Labovitz

Research and Resource Development

Gabi Labovitz (she/her) is a college student from California. She is a third-year at Colorado State University, studying Interior Architecture and Design, Construction Management, and Design Thinking. She is the president of the American Society of Interior Designers at CSU, one of the nation’s largest and most accomplished student chapters. After she graduates, she plans to pursue master’s degrees in healthcare administration and construction management.

At age 12, Gabi was diagnosed with ulcerative colitis, and subsequently visceral hyperalgesia. Since then, she has battled various other forms of chronic pain and health challenges. Her experiences as a patient and longstanding love of design sparked her initial interest in healthcare interior design, which has now evolved into a passion for healthcare facility planning and construction. She champions for the utilization of integrated project delivery in healthcare construction in order to integrate all stakeholders (including patients!) into the building process as much as possible. Last year, she served as the undergraduate intern for the Planning, Design, and Construction department at Stanford Health Care. She brings a unique viewpoint to the industry, utilizing her experiences as a patient and her education in the building industry to find ways to better serve patients, visitors, and providers.

Amy Bugwadia

Higher Education Coordinator

Amy Bugwadia (she/her) is a patient-advocate from California. Her lived experiences with ulcerative colitis and chronic illness led her to Generation Patient, where she spearheads our Higher Education initiatives and aims to increase representation, access, and support for students with chronic medical disabilities. Amy graduated from UCLA’s Honors Program with a B.A. in Political Science and a minor in Disability Studies and subsequently earned an M.S. in Community Health and Prevention Research at Stanford Medicine. Amy’s passion for patient empowerment has fueled her academic and professional endeavors, and she is currently an M.D. Candidate at Stanford University School of Medicine.

Leah Clark

Program Coordinator for the Crohn’s & Colitis Young Adults Network

Leah Clark is a second-year Ph.D. student at the University of Michigan studying nuclear engineering. Besides studying science, she enjoys traveling, going to concerts with her friends, movies, biking, and making art. Leah is also very passionate about science advocacy and science policy, particularly nuclear policy. With her doctorate degree, she plans to work in or with the government in this field. She frequently advocates for women and minorities in STEM, focusing on communication and workshops. Along with science advocacy, she is also an advocate for something that hits closer to home, her Crohn’s disease.

Leah was diagnosed with Crohn’s disease at the age of 12, and now that she is approaching her 24th birthday, she has spent almost half her life battling the illness. Currently on Remicade, she is never shy to share her struggles with Crohn’s and her journey for remission. She has been involved in many organizations that support this disease, such as being a camper and counselor for the Crohn’s and Colitis Foundation Camp Oasis for the past ten years, a patient advocate for Patients for Affordable Drugs, and a fellowship mentor for the Crohn’s and Colitis Young Adult Network fellowship program.

Erin Ard

Program Coordinator for the Crohn’s & Colitis Young Adults Network

Erin is a returning student at the University of Wisconsin – Madison studying dietetics. She first graduated in 2018 with a Bachelor’s in Human Development and Family Studies & Biology. Believing she would pursue a career in healthcare, Erin realized her true passion for nutrition and disease, eventually embracing her textbooks once again to finish the Didactic Program in Dietetics, with the goal of becoming a Registered Dietitian Nutritionist.

Erin was diagnosed with Crohn’s disease when she was just starting high school at 14 years old and has undergone Remicade infusions to control her disease. It was through her struggles with Crohn’s that she realized her interest in healthcare and nutrition. Since then she has dedicated her academic career to learning more about physiology, health, nutrition and wellness. She currently works as a hospital dietary clerk helping patients order food that align with their diet restrictions. She also enjoys just about any creative outlet, camping with her family in Wisconsin, and cooking up new healthy recipes from scratch!

Erin was a 2019 fellow for the Crohn’s and Colitis Young Adult’s Network, spreading awareness through the young adult community about living with inflammatory bowel disease. Erin struggled with self-confidence and her identity with Crohn’s disease for years after she was diagnosed, so she is focused on helping young people accept themselves by accepting their disease. She uses creativity to show her passion for health and digestive disease by writing articles for the fellowship and will be continuing with this non-profit organization in 2021.

Barbara Bierer, MD

Harvard Medical School

Barbara Bierer, MD, is the Faculty Director of the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center); Professor of Medicine, Harvard Medical School and Brigham and Women’s Hospital, Boston; and a hematologist/oncologist. She is also the Director of the Regulatory Foundations, Ethics and Law Program of the Harvard Clinical and Translational Science Center and the Director of Regulatory Policy, SMART IRB. She is Faculty in the Center for Bioethics, Harvard Medical School, and Affiliate Faculty in the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Previously she served as Senior Vice President, Research, at the Brigham and Women’s Hospital for 11 years, and was the institutional official for human and animal research, for biosafety, and for research integrity. She initiated the Brigham Research Institute and the Innovation Hub (iHub), a focus for entrepreneurship and innovation. In addition, she was the Founding Director of the Center for Faculty Development and Diversity at the BWH.

In addition to her academic responsibilities, Dr. Bierer served or serves as Chair of the Secretary’s Advisory Committee for Human Research Protections, Department of Health and Human Services (2008-2012); as a member of the National Academies of Sciences Committee on Science, Technology and the Law (2007-2016); on the Boards of Directors of Public Responsibility in Medicine and Research (PRIM&R) (2011-2020), Management Sciences for Health (MSH) (2013-2022), Vivli (2017-), Clinithink (2015-), and North Star Review Board (2020-). She chairs the Board of Trustees of the Edward P. Evans Foundation, a foundation supporting biomedical research. She has authored or co-authored over 260 publications.

Dr. Bierer received a B.S. from Yale University and an M.D. from Harvard Medical School.

Stephen Plank

Annie E. Casey Foundation

As vice president of Research, Evaluation, Evidence and Data at the Annie E. Casey Foundation, Stephen Plank balances several responsibilities. These include advancing evidence-based practices; commissioning social policy research; overseeing evaluations of Casey programs and initiatives; supporting innovative research methodologies and data resources; and building local capacity to produce and use data to inform programs, planning and policy reform.

Plank’s expertise — cultivated over 25 years — is in leveraging data, research and evaluation in the areas of education, school improvement and college and career readiness. Additionally, he has collaborated with experts in public health, housing, workforce training and other human service fields.

Prior to joining Casey, Plank served as a managing researcher at the nonprofit American Institutes for Research, one of the largest behavioral and social science research and evaluation organizations in the world. Earlier in his career, Plank directed research and evaluation at the Corporation for National and Community Service — the federal agency that administered AmeriCorps, Senior Corps and the Social Innovation Fund — and spent 18 years as a faculty member and research scientist at Johns Hopkins University in Baltimore.

Plank has authored several books and articles in journals including the American Educational Research Journal, Teachers College Record, Journal of Vocational Education Research, Sociology of Education and American Journal of Education. He holds a bachelor’s degree in mathematical methods in the social sciences and sociology from Northwestern University and master’s and doctoral degrees in sociology from the University of Chicago.

Kevin Corcoran

Lumina Foundation

Kevin Corcoran leads communication strategy and outreach for Lumina Foundation, an independent, private foundation in Indianapolis that is committed to making opportunities for learning beyond high school available to all. Before assuming this role in 2016, he directed a multi-state effort for the foundation to rethink higher education business and finance models and craft related public policy principles rooted in nonpartisan research and analysis.

Corcoran’s higher ed expertise includes competency-based learning, state authorization of online degree programs, and outcomes-based funding. The five-member communications team he leads executes a cutting-edge strategy rooted in audience, narrative, and storytelling research to advance Lumina’s leadership in higher education and workforce training. He also created a grant portfolio that supports public and nonprofit newsrooms and training organizations, including PBS NewsHour, Washington Monthly, and WGBH in Boston.

Before joining Lumina in 2007, Corcoran worked as a newspaper reporter for nearly 20 years, including as an investigative reporter for The Indianapolis Star. He has received local, state, and national awards, including the George Polk Award and the American Bar Association’s Silver Gavel. In addition, his work has been cited by groups such as Human Rights Watch and the National Mental Health Association, now known as Mental Health America.

Corcoran holds a bachelor of arts in journalism and master of business administration in corporate finance from Indiana University.

Pretima Persad

American Cancer Society

Pretima Persad is the Regional Director of Philanthropy for the Greater New York City Area at the American Cancer Society, where she specializes in donor partnerships related to health and social justice programs, specifically health access and equity. Pretima has 15 years of experience working within the New York City healthcare space on a variety of fronts. She began her career at major NYC academic medical centers, New York Presbyterian and Hospital for Special Surgery, while working on healthcare operations and various fundraising campaigns. Her career transitioned to strategy and grantmaking efforts at The Leona M and Harry B Helmsley Charitable Trust in New York City, where she was first introduced to Generation Patient, who later became a Helmsley Trust grantee. Her grantmaking efforts focused on advocacy and improving access to care for grantee partners living in low and middle-income nations.

In addition to healthcare, Pretima is passionate about access to higher education for underrepresented and economically disadvantaged populations and expanding access to clean water to low-income nations. Pretima holds a Bachelor’s degree from Manhattanville College and both a Master of Public Health degree in Epidemiology and Health Policy from New York Medical College and a Master of Business Administration degree from Seton Hall University.

Leah Clark

McAllister & Quinn

Leah Clark serves as a Senior Research Analyst for the Advanced Technology, Defense & Homeland Security Practice. In this role, Leah assists the managing directors and team through research and development for technical-based clients. She provides analytical and managerial support in grant-seeking strategies and government relations projects for clients.

Leah is a recent graduate from the University of Michigan, where she earned her M.S.E. in Nuclear Engineering and two graduate certificates, the first in Science, Technology, and Public Policy and the second in Professional Development Diversity, Equity, and Inclusion. Her research involved the characterization of detectors for neutron and gamma-ray radiation spectroscopy for nuclear nonproliferation efforts. She tested and compared different detection systems to determine best practices for underground nuclear explosion monitoring. Her work was supported by the Consortium for Monitoring, Technology, and Verification and was selected for poster and oral presentations at several conferences.

Apart from engagement with the scientific community, she has also spent several years advocating for patients with chronic illnesses and for improvements in healthcare through nonprofit and for-profit spaces. She is a program director for a nonprofit organization centered on improving the lives of young adults with inflammatory bowel disease and has mentored 25 fellows, including ten international fellows, over the past three years of the program. She also served as the Customer Service and Social Media Manager for the Mark Cuban Cost Plus Drug Company and focused on communication with patients for their affordable medication needs.

Sneha Dave

Virtual Meetings

Since March 2020, we have facilitated over 450 virtual meetings for young adults with chronic and rare conditions! To keep this a safe space for our community, all meetings are exclusively for young adult patients. Our policy forums, Roundtables, and other events are open to everyone unless otherwise noted. If you have any questions, please email us at virtual@healthadvocacysummit.org.

Please note that these meetings should not be considered therapy and are just a safe space for young adult patients to meet each other. If you have specific questions about mental health, we recommend seeking a certified mental health expert. Finally, we would like to thank Connecting to Cure Crohn’s and Colitis for sponsoring a portion of our 2023 peer-support meetings.

Meeting descriptions are beneath the event calendar. Events in this calendar are displayed in Eastern Time.

Health Advocacy Summit

In October of 2017, we hosted our first Health Advocacy Summit in Indianapolis, Indiana. This event brought together 14 attendees and six speakers from various demographics for a day of advocacy and leadership development. By 2020, we were planning to host summits in Indiana, Texas, California, Massachusetts, Illinois, and New York. Unfortunately, Covid-19 forced us to cancel all of our in-person summits for both 2020 and 2021.

However, the global pandemic allowed us to pursue other opportunities, such as our International Virtual Summit, the largest virtual event created specifically for young adults with chronic and rare conditions. This event is unlike anything we’ve seen before and has allowed us to reach young adult patients across the globe.

Moving forward, we will continue to host our International Virtual Summit annually and focus the development of our in-person summits within rural communities, where access to the internet, resources and information is limited.

The Crohn’s and Colitis Young Adults Network is an international community space and fellowship program for young adults with inflammatory bowel diseases and is the only disease-specific programming at Generation Patient.

The fellowship program is aimed at providing opportunities to a select group of young adult IBD patients, many of whom have gone on to create advocacy movements of their own. The fellowship is in its fourth year, with fellows coming from all over the world, including Ethiopia, Dubai, India, Greece, Malaysia, Canada, and the U.S.

Fellows produce monthly online content to share with our growing community of young adults with IBD. for young adult IBD community. We also host two virtual meetings specific to young adults with IBD every month in addition to a variety of other activities.

Visit www.ccyanetwork.org for more information or follow @ccyanetwork on Instagram and Twitter to stay connected!

News

August 2, 2023

Generation Patient Receives Grant from Responsible Technology Youth Power Fund

Generation Patient has received a grant from the Responsible Technology Youth Power Fund for our work to increase oversight of pharmaceutical direct-to-consumer advertising on social media.

Beginning in July of 2022, our team expressed our concerns regarding the increasing prevalence of direct-to-consumer advertising by pharmaceutical companies on social media platforms such as TikTok and Instagram. As the regulation is outdated to newer platforms, we recognized the urgent need to address the potential consequences and implications of direct-to-consumer advertising for our demographic. Prescription medicines advertised on social media lack appropriate safety information and disclosures, making it difficult for young patients to make informed decisions about their health. The increasing use of influencers to advertise prescription medicines also poses a great concern for the negative impact on young patients.

“As an organization led entirely by young adults with chronic medical conditions, we are eager to drive young adult-patient-led solutions with researchers, clinicians, and public interest groups,” said Sneha Dave, executive director at Generation Patient. “Misleading prescription drug and supplement advertisements pose an increasing challenge with the vast misinformation and disinformation, especially on TikTok and Instagram.”

This grant will enable us to proactively address this issue by collaborating with various representatives in the fields of technology and public health while advocating for improved and more effective standards in the regulation of direct-to-consumer advertising. We believe that direct education, resource sharing, and peer support are our most effective tools to create pathways for young adult patient empowerment. This award will allow us to continue this crucial work within the social media landscape.

Generation Patient is a U.S.-based and internationally connected non-profit organization created and led by young adults with chronic conditions. We are the largest organization representing adolescents and young adults with chronic conditions through our peer support initiatives, community building, and systems advocacy. Our independence is important to us, and we do not accept funding from the private healthcare industry and are supported by philanthropic foundations.

Ivy Barrow

01 October 2023

Reference Sources

https://static1.squarespace.com/static/5f659fae0281c341c48e1dbe/t/627ddf6588e6934711581418/1652416357908/GFM+social+comparison+guide+.pdf

https://generationpatient.org/team

https://generationpatient.org/board

https://generationpatient.org/collaborations

https://generationpatient.org/virtual-meetings

https://generationpatient.org/summits

https://generationpatient.org/roundtables

https://generationpatient.org/ccyan

https://generationpatient.org/health-policy-lab