Publications

Peer-reviewed

• 11 Feb 2025

  Gastric Cancer Patient Insights: Patient-Reported Outcomes and Real-World Perspectives from the Gastric Cancer Patient Community

  Oncology & advocacy. Journal of Clinical Oncology 43 (4_suppl): 362 · with Martha Raymond

  Background: According to the National Cancer Institute Surveillance, Epidemiology, and End Results Program, an estimated 26,890 patients in the United States will be diagnosed with gastric (stomach) cancer in 2024. Estimated deaths from the disease in 2024 will reach 10,880, with a five-year relative survival rate of 36%. Understanding the need for increased gastric cancer education and awareness, the GI Cancers Alliance created a 12-month series of engagement opportunities to better understand and listen to the gastric cancer patient voice and perspectives. M

  Cite: Gastric Cancer Patient Insights: Patient-Reported Outcomes and Real-World Perspectives from the Gastric Cancer Patient Community
• 11 Feb 2025

  Patient-Reported Outcomes in GI Cancer: Leading Change to Meet the Needs of the Gastrointestinal Cancer Community

  Oncology & advocacy. Journal of Clinical Oncology 43 (4_suppl): 813 · with Martha Raymond

  Background: According to the World Health Organization International Agency for Research on Cancer, globally gastrointestinal (GI) cancers account for 1 in 4 cancer cases and 1 in 3 cancer deaths, with an estimated 4.8 million new cases and 3.4 million GI cancer deaths reported annually. Understanding the global burden of GI cancers and the importance of understanding the real-world impact of a GI cancer diagnosis, the GI Cancers Alliance (GICA) conducted a 12-month patient-reported outcomes (PRO) research initiative that included a workshop at the 2023 American Society of Clinical Oncology (ASCO) annual meeting. In addition, our PRO research was published in the Journal of Clinical Oncology (J Clin Oncol 42, 2024 suppl 3; abstr 731) with a poster presented at the 2024 ASCO Gastrointestinal Cancers Symposium.

  Cite: Patient-Reported Outcomes in GI Cancer: Leading Change to Meet the Needs of the Gastrointestinal Cancer Community
• 2024

  Patient-Reported Outcomes: The Unmet Needs of the Gastrointestinal Cancer Community

  Oncology & advocacy. Journal of Clinical Oncology 42 (3_suppl): 731 · with Martha Raymond

  According to the World Health Organization International Agency for Research on Cancer, gastrointestinal (GI) cancers account for 1 in 4 cancer cases and 1 in 3 cancer-related deaths worldwide. An estimated 4.8 million new cases of GI cancers and 3.4 million related deaths occur annually. Understanding the need for increased GI cancer awareness, patient education and support, the GI Cancers Alliance developed a series of engagement activities for the GI cancer community as a needs assessment to identify critical gaps in support services, fragmented education, and disease awareness. Methods: Our 12-month patient-reported outcomes (PRO) research included an online anonymous survey, individual and small group interviews, focus groups, advisory boards, and an interactive workshop at the 2023 American Society of Clinical Oncology annual meeting. 1,122 patients participated during this 12-month PRO research period. Participants reported being diagnosed with one of the following GI cancer primary tumor types: Anus (3%), Appendix (2%), Bile Duct (6%), Colon (19%), Esophagus (7%), Gallbladder (5%), Gastric (14%), GI NET / GI Carcinoid Tumor (3%), Liver (7%), Pancreas (6%), Small Intestine (4%), Rectum (23%), Unknown primary location (1%). Results: Overarching areas of unmet need include: health disparities throughout the care continuum for underserved populations (21%); lack of adequate precision oncology patient education, including biomarker education and testing (19%); the rise of early-age onset (EAO) in GI cancers and the unique needs of the young adult (YA) population (18%); nutritional wellness education (17%); insufficient support for family caregivers and caregiver respite services (16%) scarcity of patient-centered care and adequate patient-clinician communication (11%). Conclusions: Our PRO research underscores the unmet needs and gaps in support services of the GI cancer community. Our global call to action includes partnering with our 100+ member organizations to amplify the patient voice and patient-lived experience, and cross-collaboration with our community of advocates, patients, caregivers, and clinicians. Our shared call to action and continued collaboration provides a greater impact for our GI cancer community to help meet patient needs and eliminate critical gaps in services.

  Cite: Patient-Reported Outcomes: The Unmet Needs of the Gastrointestinal Cancer Community
• 2023

  The Cancer Caregiver Lived Experience: Supporting and Advocating for Patients With Cancer Throughout the Care Continuum

  Oncology & advocacy. JCO Oncology Practice 19 (11_suppl): 222 · with Martha Raymond

  Background: Data from the National Cancer Institute’s Surveillance, Epidemiology & End Results Program (SEER 2022) estimates there are currently over 18.1 million cancer survivors in the United States who rely on family and friends to provide caregiver support. Family and volunteer caregivers fulfill a vital and essential role for cancer patients throughout the care continuum and are at the forefront of advocating and navigating the health care system for the patients under their care. Recognizing the caregiver’s lived experience and the demands and obstacles caregivers endure has a direct impact on understanding the challenges cancer patients face daily. Methods: November 2022 – April 2023 the Raymond Foundation hosted nationwide cancer caregiver focus groups, personal interviews, advisory boards, and online surveys. Primary goals included reaching a diverse range of caregivers in medically underserved communities, rural, urban and community oncology settings. In addition, researchers were interested to learn how the cancer caregiver experience and burden had evolved since our nationwide cancer caregiver published studies in 2018 and 2020. Results: 1214 caregivers (48% identified as male; 52% identified as female) participated during the six-month research period. 96% stated they provide direct patient care, such as: overseeing and ensuring adherence of oral chemotherapy or immunotherapy; communicating with clinicians to coordinate medications for adverse effects; surgical and treatment-related wound and drain care; colostomy, ileostomy, urostomy, and percutaneous endoscopic gastrostomy (PEG or G) support; 94% of caregivers reported they are included in all medical and treatment decisions; 91% reported they felt ill-equipped to navigate complex medical terminology including precision medicine information, biomarker, genetic and hereditary testing and navigating clinical trial options; 87% reported respite care, additional support and educational services would enable them to become a more empowered caregiver and patient advocate; 78% reported their overall quality of life had diminished since becoming a caregiver with feelings of depression, anxiety, financial insecurity, burn-out, loneliness and fear. Conclusions: Cancer caregivers experience significant challenges as they care for their loved one facing a cancer diagnosis. Caregivers are trusted partners in treatment decision making, but too often caregivers do not receive the tools they need to help make informed decisions. Additional caregiver education and support services are essential, so caregivers can provide the best possible support for patients throughout the care continuum. © 2023 by American Society of Clinical Oncology

  Cite: The Cancer Caregiver Lived Experience: Supporting and Advocating for Patients With Cancer Throughout the Care Continuum
• 1 Feb 2022

  Patient-Reported Outcomes: The Anal Cancer Patient Lived Experience

  Oncology & advocacy. Journal of Clinical Oncology 40 (4_suppl): 2 · with Martha Raymond

  Background: Anal Cancer incidence and deaths from the disease have been rising in the United States for the past two decades. Data published in the Journal of the National Cancer Institute (11/19/2019) indicate from 2001 to 2015, anal cancer overall incidence increased by 2.7% per year and deaths rose by 3.1 % each year. This data indicates that anal cancer may be one of the fastest growing causes of cancer incidence and mortality. Now, especially with data indicating the rise in incidence rate, it is imperative that the anal cancer patient lived experience be better understood, including gaps in awareness and prevention education that may lead to earlier diagnosis. The Raymond Foundation in partnership with the anal cancer patient community is amplifying the patient voice by facilitating a series of impactful roundtable conversations to underscore the patient lived experience.

  Methods: From March–August 2021, the Raymond Foundation convened virtual roundtable conversations and individual interviews with 171 anal cancer patients and survivors. Overarching themes from our conversations included: Barriers to earlier diagnosis and awareness, Frustration and anger by the lack of new treatment protocols, Quality of life after diagnosis, including daily distress levels leading to allostatic load.

  Results: 94% of patients/survivors reported lack of anal cancer awareness and prevention education that may have led to a later stage diagnosis; 93% reported feeling stigmatized with a marked decrease in quality of life post diagnosis; 90% reported feeling embarrassed when discussing their diagnosis with family and friends; 86% reported frustration and anger by the lack of new treatment options; Anxiety (81%), Fear (78%) Depression (73%) were common daily distress concerns; Reported physical effects of the disease and treatment, include Radiation Proctitis (71%) Fecal Incontinence (68%) Urinary Incontinence (65%). Less than half (44%) of patients felt empowered and comfortable advocating for themselves regarding their healthcare and treatment decisions.

  Conclusions: Anal cancer patients have many unmet needs–both physical and psycho-social. Their voices and lived experiences provide a roadmap to better understand these unmet needs. Based on our patient-reported outcomes research, we will continue our outreach and partnership with the anal cancer community to provide patient support, education and awareness programs and campaigns that help meet the needs of the anal cancer patient community.

  Cite: Patient-Reported Outcomes: The Anal Cancer Patient Lived Experience
• 15 Jan 2021

  Exploring Cancer Clinical Trial Participation in the New Normal of COVID-19: The Patient Perspective

  Oncology & advocacy. American Society of Clinical Oncology

  The impact of coronavirus (COVID-19) has significantly affected cancer patients seeking to enroll in a clinical trial. The pandemic has led to an unprecedented disruption across the cancer research community pausing trial operations. Data from the National Institute of Health and the National Library of Medicine indicates 988 cancer clinical trials were suspended from March – September 1, 2020, with 60% of institutions enrolling patients at a lower rate. Our research underscores the patient perspective of clinical trial participation amid COVID-19.

  Cite: Exploring Cancer Clinical Trial Participation in the New Normal of COVID-19: The Patient Perspective
• Sep 2020

  Abstract PO-032: Patient-Centered Communication: Collaborative Learning and Communication Strategies for Patients and Health Care Providers in the New Normal of COVID-19

  Oncology & advocacy. Clinical Cancer Research 26 (18_Supplement): PO-032 · with Martha Raymond

  Background: Data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) program estimate that in 2020 over 1.8 million new cancer diagnoses will occur. SEER data also indicate that over 15.5 million patients/survivors are currently living with a cancer diagnosis in the United States. Amid COVID-19, transitioning care beyond the clinic to minimize exposure for patients and health care providers is essential. Now more than ever, new and evolving ways to communicate openly and effectively are crucial for patients and their health care team.

  Methods: In March–May 2020, the Raymond Foundation hosted nationwide virtual focus groups and town halls for cancer patients, survivors, and caregivers to gain a better understanding of how COVID-19 is affecting their cancer care, communication with their health care team, and shared decision-making. Primary goals included reaching patients in rural, urban, and community oncology settings to gain perspective from diverse populations.

  Results: 489 patients, survivors, and caregivers (54% female, 46% male) provided the following insights: 89% reported communication with their health care team had deteriorated since the pandemic; 94% indicated the need for increased communication with their health care team; 42% had a general knowledge of telehealth while 58% had little to no knowledge; 98% indicated they would like to learn more about telehealth options and would try this advanced class of service if offered by their health care team; 64% reported they were not able to accurately communicate treatment adverse effects leading to increased suffering; and 96% reported increased isolation and fear of the unknown care landscape.

  Conclusion: Cancer patients realize the importance of patient-centered communication to facilitate a personalized dialogue to actively participate in their care. Empowering patients with the skills they require to comprehensively perceive telemedicine, virtual care, and remote monitoring will help minimize patient risk and provide an opportunity for patients to engage with their health care team throughout the care continuum.

  Cite: Abstract PO-032: Patient-Centered Communication: Collaborative Learning and Communication Strategies for Patients and Health Care Providers in the New Normal of COVID-19
• 2020

  Caregiver Burden: Empowering Caregivers with Shared Decision-Making Strategies and Skills to Improve Patient Quality of Life and Outcomes

  Oncology & advocacy. American Society of Clinical Oncology · with Martha Raymond

  Background: Data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER 2016) program estimates there are 15.5 million cancer survivors in the United States who rely on cancer caregivers every day. Caregivers play an essential role throughout the care continuum, greatly impacting a patient’s quality of survivorship.

  Methods: From August 2019 to March 2020 the Raymond Foundation hosted nationwide caregiver focus groups and an online survey. Primary goals were reaching caregivers and the patients they serve in rural, urban, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via video conferencing.

  Results: 1,012 caregivers and the patients they care for (41% male, 59% female) participated: 92% reported a lack of educational resources necessary to participate in shared decision-making regarding treatment protocol; 90% reported they lacked communication strategies required to effectively communicate with their healthcare team; 87% reported they would like to learn more about clinical trials but did not know where to start; 85% reported they did not feel comfortable reporting treatment adverse effects; 94% reported that working toward a patient-centered, advocate-based care approach would lead to enhanced quality of life and improved outcomes.

  Conclusions: Cancer caregivers and the patients they assist understand the importance of shared decision-making and patient-centered care. Based on these focus groups and survey findings, the call to action includes developing the Cancer Caregiver Advocacy Plan — an educational resource to address educational gaps and empower caregivers to become informed healthcare advocates.

  Cite: Caregiver Burden: Empowering Caregivers with Shared Decision-Making Strategies and Skills to Improve Patient Quality of Life and Outcomes
• 2018

  The Caregiver Perspective: Advancing the Understanding of Cancer Caregiving in the Palliative Care Setting

  Oncology & advocacy. Journal of Clinical Oncology 36 (34_suppl): 17 · with Martha Raymond

  Background: 2018 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Throughout the care continuum, cancer caregivers provide invaluable support which greatly impacts and improves patient quality of life. In the palliative care setting caregiver support is vitally important, but many caregivers struggle to take care of their own needs and are not aware of supportive services. Our study explores the unmet needs of cancer caregivers in the palliative care setting.

  Methods: Over a two-year time period (2015-2017), our professional facilitator met with cancer caregivers in 32 states hosting nationwide focus groups. Primary goals were reaching caregivers in rural, urban, medically underserved, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via facetime conferencing.

  Results: 778 caregivers (42% male, 58% female) participated. 92% of caregivers did not feel comfortable defining palliative care nor did they realize the various supportive elements palliative care provides. 76% were extremely anxious during care transitions; 71% feel overwhelmed with daily caregiving tasks; 69% want to help make end of life decisions including advance directives in partnership with their loved one, but did not feel equipped to make tough decisions; 64% report lack of patient/caregiver centered communication with their healthcare team, including guidance on adverse effects and training for medical hands-on tasks.

  Conclusions: Caregivers in the palliative care setting need additional supportive services, effective interventions, and educational programs to meet their unmet needs. With additional support and awareness, enhanced quality of life for both caregiver and patient is possible. Our conversations with caregivers will continue as we increase palliative care awareness, collaborate with partners, develop meaningful programs, and expand our outreach to help meet the needs of caregivers in the palliative care setting.

  Cite: The Caregiver Perspective: Advancing the Understanding of Cancer Caregiving in the Palliative Care Setting
• 2018

  The Caregiver Voice: Insights into Caring for the Young Adult Colorectal Cancer Patient

  Oncology & advocacy. Journal of Clinical Oncology 36 (7_suppl): 148 · with Martha Raymond

  Background: According to data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program, since 1994 statistics show a 50% increase in young onset colorectal cancer incidence in the 20–49 age group. Researchers estimate that by 2030, more than 1 in 10 colon cancers and 1 in 4 rectal cancers will be diagnosed in young adults under 50 years of age. Based on these alarming statistics and understanding the vital role caregivers play throughout the cancer continuum, our study explores the emotional and psychosocial implications for caregivers of young adult colorectal cancer survivors.

  Methods: From September 2015 – September 2017, our professional facilitator with over 25 years of cancer advocacy work hosted nationwide caregiver focus groups. Primary goals included reaching caregivers in rural, urban and community oncology settings to gain perspective from diverse populations. During the study period, we spoke with caregivers in 32 states via traditional focus group settings and online via Skype format.

  Results: 576 caregivers (37% male, 63% female) participated in our national focus groups. When asked to describe in one word their current feelings, the top ten responses were: Stressed, Anxious, Alone, Exhausted, Angry, Needed, Guilty, Burned-Out, Overwhelmed, Frustrated. 55% of the young caregivers reported they were experiencing self-health decline (Can’t sleep, can’t focus – feel sad all the time). 73% reported they felt lost and totally helpless (No control over situation or outcome). 89% reported depression (We hurt because we can’t take their pain away). 76% reported they felt ill-equipped to help their loved one leading to stress and anxiety (Desperate for whatever might help).

  Conclusions: New and expanded caregiver support services are needed. Emotional and psychosocial support are essential to the well-being of our caregivers as they provide vital support to patients in need throughout the cancer care continuum. We will continue the conversation with caregivers as we create programs and expand support services.

  Cite: The Caregiver Voice: Insights into Caring for the Young Adult Colorectal Cancer Patient

Thesis

• 2024

  Harry Potter and the Journey to Hogwarts: Fan-Induced Tourism at The Making of Harry Potter Studio Tour London

  Fandom & culture. A.M. thesis, Harvard University

  J. K. Rowling’s literary success with the Harry Potter series has transcended the realm of fiction and popular culture, transforming into a global cultural phenomenon since its debut in 1997. With over 600 million copies of Harry Potter sold worldwide, including eleven record-breaking motion pictures, Rowling’s achievement has expanded beyond literature and film and has given rise to global fan-induced tourism. The current study focuses on the Harry Potter site, The Making of Harry Potter Studio Tour London. This fan-tourist space fuses Harry Potter’s global fandom with tourism, providing a behind-the-scenes experience of Rowling’s Wizarding World through the films’ cinematic sets, backlots, and special effects. This study seeks to uncover how Harry Potter fan-induced tourism influences cultural, communal, and personal experiences while touring The Making of Harry Potter Studio Tour London by employing subject methodologies from social anthropology, fandom studies, and tourism research. Through an anthropological examination of space, place, embodiment, emic participant observation, and fan interviews, this research demonstrates how The Making of Harry Potter performs as a sentimental fan-tourist destination, offering profound embodied and placemaking experiences for Harry Potter’s fandom. This study traces the ways Harry Potter’s fans undertake global travel to London’s Studio Tour due to the cultural, communal, and personal experiences that can be, and are, established exclusively at The Making of Harry Potter.

  Cite: Harry Potter and the Journey to Hogwarts: Fan-Induced Tourism at The Making of Harry Potter Studio Tour London

Conference papers

• 2023

  The 12th Annual Harry Potter Academic Conference

  Fandom & culture. 12th Annual Harry Potter Academic Conference, Philadelphia, PA

  Join Margaret-Ann Simonetta at this year’s 12th Annual Harry Potter Academic Conference where she discusses her 2023 anthropological fandom fieldwork in London. Mischief will be managed!

  Cite: The 12th Annual Harry Potter Academic Conference
• 5 Aug 2022

  The Harry Potter Conference 2022: Fantastic Memes and Where to Find Them

  Fandom & culture. 11th Harry Potter Conference, Chestnut Hill College

  The Harry Potter Conference is a non-profit annual academic conference hosted by Chestnut Hill College (Philadelphia, PA). This interdisciplinary conference provides a forum for scholarly presentations arising out of J.K. Rowling’s literature. ’ Fantastic Memes and Where To Find Them, ’ authored and presented by Margaret-Ann Simonetta, is a Featured Presentation for the 2022 HPAC Conference.

  Cite: The Harry Potter Conference 2022: Fantastic Memes and Where to Find Them

Selected coursework

Unpublished papers written for graduate and undergraduate courses at Harvard.

• 15 Dec 2021

  Harry Potter and the Quest for Justice

  Fandom & culture.

  This cultural composition explores the nature of wizarding justice and its deployment within the Harry Potter series and cross-examines how the cultural behaviors encompassing justice, or a lack thereof, have greatly altered the wizarding world since the First Wizarding War in 1970.

  Cite: Harry Potter and the Quest for Justice
• 12 Mar 2021

  Harry Potter and the Delectable Dessert: A Cultural Culinary Analysis of Treacle Tart in the Harry Potter Series

  Food & consumption. American Eating: Succotash, Spam, and Cultures of Food

  Hungry for Hogwarts? Take a bite of the Harry Potter series through this cultural culinary analysis of Harry’s favorite dish: treacle tart. Originally known as a traditional British treat, the essence of treacle tart has drastically changed since the inception of the Potter series; spawning wizarding bakers across the globe. Looking at the dish through an anthropological lens, there’s no doubt this sweet-tooth tart has left a societal impression for muggles and wizards alike.

  Cite: Harry Potter and the Delectable Dessert: A Cultural Culinary Analysis of Treacle Tart in the Harry Potter Series
• 5 Aug 2020

  Harry Potter and the Master of Slaves

  Fandom & culture. ANTH S-1662: The Human Market: The Global Traffic in Human Beings

  This critical essay explores the concept of bondage and race within the Harry Potter series. Through the lens of historical enslavement, this piece investigates how the wizarding world deems its people and cultural heritage through house-elf slavery. What do the lives and legacies of the multi-racial characters within the Harry Potter series, and their perception toward the principals of slavery, ethically teach Harry Potter enthusiasts on the overwhelming topic of personal body rights and the enslaved? This loaded question is up for much debate and discussed within Harry Potter and the Master of Slaves.

  Cite: Harry Potter and the Master of Slaves
• 8 Aug 2019

  Harry Potter and the Battle of Blood

  Fandom & culture. ANTH S-1728

  This critical essay explores the concept of blood, ethnicity, and race within the Harry Potter series. Through the lens of the Anthropology of Cinema and Ethnic Identity, this piece investigates how the wizarding world deems their people and cultural heritage through wizarding bloodlines. Muggleborn, Pureblood, Half-Blood, Squib… what does it mean to possess wizardly blood, and how does the blood that runs through one’s veins separate those in wizarding society? Which wizarding blood identity reigns superior throughout the Harry Potter series? These open-ended questions are up for much debate and discussed within Harry Potter and the Battle of Blood.

  Cite: Harry Potter and the Battle of Blood
• 2018

  Harry Potter and The Tale of The Three Brothers

  Fandom & culture.

  This critical essay explores the concept of fairytales, specifically “The Tale of the Three Brothers,” in the Harry Potter series. While many scholars focus solely on the Harry Potter series, Beedle the Bard’s “The Tale of The Three Brothers” plays a pivotal part in the series; both for the characters and the reader. This paper investigates the behaviors behind “The Tale of The Three Brothers” and how the characters, such as Harry Potter and Lord Voldemort, react to this timeworn wizarding tale.

  Cite: Harry Potter and The Tale of The Three Brothers
• 2017

  Harry Potter and the Master of Death

  Fandom & culture.

  This critical essay explores the concept of death in the Harry Potter series, specifically through the lens of Harry Potter and Lord Voldemort. While these two characters share an abundance in common, they’re also opposite in nature due to their outlook on the afterlife and what that means for the greater wizarding world. This paper investigates the reasoning behind Harry Potter and Lord Voldemort’s differing outlooks on the topic of death and how such individual perceptions and choices ultimately shape the wizarding world.

  Cite: Harry Potter and the Master of Death