Health Story Type: Webpage

Pulse- Voices from the Heart of Medicine

Pulse- Voices from the Heart of Medicine is an online publication that features stories, poems, haikus, and visual works from various voices within the healthcare field. Stories come from health care providers in various roles and from patients and family members. For example, “Cultivation Also Starts With C” is a poem that uses the invasive, difficult to remove plant Japanese knotweed as a metaphor for cancer and “Another GSW” details a young doctor’s encounter with a patient who had extensive injuries from a single bullet wound, and how the experience made her consider the ramifications of gun violence in America. Length of items ranges from 40 to 400 words for written works. Each month's issue is on a theme (recent examples included Alone, Coming Undone, Unsung Heros) and the "New Voices" section features "stories by those whose faces and perspectives are underrepresented in media and in the health professions." The website offers several ways to search. For example, one can click through content by year, all the way from 2023 to 2016. When you click on a story, you can also see a lengthy list of “popular tags” that you can click on to search by subject matter. The "visual works" tab includes an option to see a slideshow of submissions, as does the "haikus" tab, which could be helpful for more efficient browsing. Other notable features are that the stories and poems tabs display a phrase from each submission as an attention-getting preview. Similarly, the “more voices” tab displays a themed photograph with each submission.

True Stories: Living with HIV

This web page provides the stories of three people with HIV. Each story is unique, but they have all come to embrace their lives with HIV, providing support to those who recently received a diagnosis. Chelsea White now runs an HIV and AIDS adolescent outreach program. Nicholas Snow hosts a radio show that touches many topics, including life with HIV. Josh Robins manages a blog to emphasize that he is still the same person, to reduce the stigma of AIDS, and to connect with others who also have the disease. This 10-minute read could be used to discuss stigmatizing conditions, perhaps to have general audiences reflect on stigma or a starting point for further research into how those diagnosed with HIV can lead the lives they had before the diagnosis.

Fae Kayarian: Physician in Training, Poet in Progress

Fae Kayarian is a poet and medical student who began as a scribe at Harvard Medical School. She has shared her experiences through poetry in the form of an autobiography titled "Journals of a Visitor" and several stand-alone poems. Her website contains eight poems ranging in topics in medicine from her point of view as a bystander and now a student. Generally useful for close reading of poetry. Two poems - "The Color Blue" and "It's been six years" could interest families of patients experiencing loss and dementia. Others would be beneficial for teaching physicians and other health professionals in mentor positions. Her poetry would serve as a reminder of what it's like to be a student and the impact that medical educators have on the future of medicine as mentors.

Front Lines: Poets & Physicians Document COVID-19

This project paired poets with NYC-area physicians to write poems as a way to provide space within and beyond the creative process for catharsis, shared understanding, and healing. The project started in spring of 2020 as a collaboration between two sisters--poet Elizabeth Fernandez and physician Nicole Fernandez. At the time I accessed this (8/11/22) there were 13 poems by 8 poets, written "for" 8 physicians. The poems (from June and July 2020 and October 2021) capture the experiences and emotions of these front-line health care providers during the early part of the COVID-19 pandemic.

Patients as Teachers Project

The Patients as Teachers program pairs two first year medical students with a patient to learn more about how illness affects a patient's whole life. Students visit patients in their homes or other locations and learn about the impact of illness, patient coping and resilience, and positive and negative interactions with the health care system. The website has an archive of videos students have created about patient experience. For example, a video from 2020 interviews Jason Barup about his experience with clear cell renal carcinoma and also includes an interview with psychologist Michael Hayes, who worked with Barup through his diagnosis and treatment. The storyline puts Barup's illness experience in the broader context of his identify as a runner. The videos could be used to provide examples of patient narratives (they cover a range of medical conditions). They can also prompt reflection on patient-provider communication and interactions with health care systems.

Patient & Family Storytelling: Real People. Real Experiences. Real Impact.

This Alberta Health Services website lists 107 videos from patients and their families. There is a brief description of each video (e.g., the health condition, who tells the story, what larger issue or point the story illustrates). It is possible to search the collection (e.g., for stories related to "cancer"). Some examples of health narratives on this website include: Rose’s Story: Joy and Grief, a look into how healthcare providers can help us navigate tragedy and foster healing. Rose explores the impact and experience of the stillbirth of her son and daughter. (The website includes a content warning.) B’s Story: Learning to B myself, a story about the challenges of occupational stress, gender identity, mental health, and transgender advocacy from a rural context. Jeraldine’s Story: There is Hope, a story of the experiences of an Indigenous woman who experiences the ramifications of intergenerational trauma. This story advocated for Canada to provide culturally appropriate healthcare to indigenous populations. Although produced by a health care system, these videos give more voice to patients and family members than is often the case with these kinds of collections. They are well-produced and many address the experiences of historically under-served and marginalized populations.

Look Now Project: Survivor Stories

This digital humanities project includes stories and images of breast cancer survivors. Project creator Tula Goenka (a breast cancer survivor) and her collaborators seek to "break down the barriers between a survivor's public persona and their private struggles with the disease, and to put a face on breast cancer in our local community." The first installation in 2018 included interactive text, graphics, mirrors, and an experimental silent film accompanying 25 participants' clothed photographic portraits and images of bare chests, and 19 who chose to remain anonymous except for their bare chest close-ups. In 2019, Goenka and her collaborators created TitBits: Breast Cancer Stories, a documentary theater performance. The multi-media website includes media coverage of Look Now and TitBits, oral histories, images of bare chests after lumpectomy or mastectomy, and resources on breast cancer. I have used Anju's story ("Life Happens Keep Smiling") from this website in a Narrative Scribe Training workshop for college students, medical students, and health care professionals. After viewing the video together, we discussed what may be left out of a transcript and the importance of listening closely not only to what is said, but also how it is said, what is not said, and how our own experiences and identities shape what we hear.

Poems from Life with Juniper Village

Poems from Life with Juniper Village is a project developed in partnership between the Pennsylvania Center for the Book and Juniper Village Senior Living at Brookline. The goal is to share and celebrate the lives of Juniper residents with original, individualized poems presented by local poets. The website for the Senior Living community can be found here: https://junipercommunities.com/community/brookline-senior-living/ This 2022 site is the third year of the project, which is described here: https://crdpala.org/2019/03/20/poems-from-life-with-juniper-village-literature-links-communities/ The project illustrates the power of poetry as a form of narrative for honoring life experience and promoting well-being. It is also an illustration of a community-based project that utilizes narrative arts to celebrate community and seniors.

Penn State Collection of Graphic Medicine Narratives

Organized by each year the class has been taught, this is collection of graphic narratives illustrates issues medical students face with details of med school life: imposter syndrome, harsh criticism, feeling insecure vs thinking they can save a patient's life if they go with their instincts, etc. Amazing range of writing and drawing styles, very candid, some quite powerful. Some use medical terminology beyond interest or understanding of lay reader.

The ART of infertility

This is the link to a website for a national arts organization based in Michigan and Wisconsin. The organization curate art exhibits that portray living with infertility, designes curricula and writing worksins, plans outreach events, and advocates for infertility rights. They dsribe their missions as follows: "Through art, we break the silence around reproductive grief and push back against common misconceptions. We invite you to join us in our fight to make infertility visible." The site includes galleries of exhibitions, including photos with artist statements and a blog that features personal narratives about the experiences of infertility.