PHE - Resources

"Slack groups and social media are connecting people who've never fully recovered from coronavirus to collect data on their condition."

"Tuesday, August 18, 2020 Articles referenced: Systems entrepreneurship: a conceptual substantiation of a novel entrepreneurial "species" https://link.springer.com/article/10.... Your 'Surge Capacity' Is Depleted - It's Why You Feel Awful https://elemental.medium.com/your-sur... The Role Of Empathy and Compassion In Preventing Burnout https://medium.com/thrive-global/the-..."

Recommended by Kabir Kadre: "Abstract Importance  Home health care workers care for community-dwelling adults and play an important role in supporting patients with confirmed and suspected coronavirus disease 2019 (COVID-19) who remain at home. These workers are mostly middle-aged women and racial/ethnic minorities who typically earn low wages. Despite being integral to patient care, these workers are often neglected by the medical community and society at large; thus, developing a health care system capable of addressing the COVID-19 crisis and future pandemics requires a better understanding of the experiences of home health care workers."

Recommended by DeAunne Denmark MD PhD: "The Human Connection of Palliative Care: Ten Steps for What To Say and Do"

Recommended by DeAunne Denmark MD PhD: "Most people who need palliative care are not dying. They are living, and often for a very long time with serious illnesses.... They have a tremendous burden of suffering and caregiver distress, but they are not dying. Palliative care was an answer to that gap. It was recognizing that living with a serious illness nowadays is almost always a chronic disease. No matter how long people have to live, they deserve the same attention to quality of life, treatment of symptoms, management of depression, support for their families, and support for social issues like financing and housing. It should be based on need, not prognosis." -- Diane Meier, MD

Recommended by DeAunne Denmark MD PhD: This is a touching personal narrative that helps us understand the origins of Dr. Meier's compassion.

"Dedicated defender of the beauty of humanity, the senses and of a life well lived to the end, palliative care physician and activist BJ Miller brings his expansive vision to bear on the state of the end of life experience. BJ shares his take on the current situation and offers possible routes for how we might close the gap between intention and action in our search for generative solutions that reshape how we think about illness, dying and caregiving."

Recommended by DeAunne Denmark MD PhD: BJ Miller, MD @ UCSF Palliative Medicine - one of the foremost experts and innovators in the field. "You don't have to spend much time there (Zen Hospice) to realize that the most crucial, and distinctive, piece of the operation is its staff of volunteers. Freed of most medical duties by the nursing staff, the volunteers act almost as existential nurses. They sit with residents and chat, offering their full attention, unencumbered by the turmoil a family member might feel. The volunteers are ordinary people: retired Macy's executives, social workers, bakers, underemployed millennials or kibitzing empty-nesters. Many are practicing Buddhists. Many are not. (Miller isn't.) But Buddhism informs their training. There's an emphasis on accepting suffering, on not getting tripped up by one's own discomfort around it. "You train people not to run away from hard things, not to run away from the suffering of others," Miller explained.

BJ Miller, MD reminds us to consider the fullest view of what it means to be human - from the messy, uncomfortable issues that arise around dying to the delight of being alive in our bodies - as a path to understanding the possibilities available to open to design for the end of life experience.

Recommended by DeAunne Denmark MD PhD: "Enhancing the experience of caregiving by teaching mindfulness and compassion" Zen Caregiving Project is a non-profit organization based in San Francisco, California with over 30 years of experience in practicing and teaching mindfulness-based, compassionate caregiving. We offer courses, workshops, and training for professional, family, clinical, and volunteer caregivers. Through our work, we provide a context for public discussion of caregiving, loss, and death.

This resource is especially meaningful for me. Thank you for sharing it!

"Palliative care is an interprofessional specialty focused on symptom management, quality of life, and relief of distress for patients who are living with serious illness and their families. The UCSF Interprofessional Palliative Care Continuing Education Course (Practice-PC) was created in 2015 to address a workforce shortage that is a key limiting factor in the dissemination of palliative care."

Recommended by DeAunne Denmark MD PhD: Virtual Conference - On Demand - June 16 - November 17, 2020 A wide range of topics will be covered, but all relate to how compassionate care can support goals like workforce well-being, patient experience, safety, quality and innovation, as well as additional content to support caregivers and leaders during this challenging time.

Recommended by DeAunne Denmark MD PhD: Our Mission To put compassion at the heart of healthcare through programs, education and advocacy. Our Vision: A world where all who seek and provide healthcare experience compassion.

Recommended by DeAunne Denmark MD PhD: Serious Illness Digital Ecosystem (SIDE) is the intentional aggregation of disparate digital and mobile health technologies into a single system that connects all of the actors involved in serious illness patient care. The 5 pillars of a SIDE are: Identification, Education, Engagement, Service Delivery, and Remote Monitoring. To me, this is just a preliminary and pragmatic first step(s). It also misses or misrepresents large care gaps, e.g. framing as the need for education/engagement of patients vs directing to physicians/providers. That said, I think there are still some useful constructs for us here for digital infrastructure.

"Discussion This study found that in patients who had recovered from COVID-19, 87.4% reported persistence of at least 1 symptom, particularly fatigue and dyspnea. Limitations of the study include the lack of information on symptom history before acute COVID-19 illness and the lack of details on symptom severity. Furthermore, this is a single-center study with a relatively small number of patients and without a control group of patients discharged for other reasons. Patients with community-acquired pneumonia can also have persistent symptoms, suggesting that these findings may not be exclusive to COVID-19.6 Clinicians and researchers have focused on the acute phase of COVID-19, but continued monitoring after discharge for long-lasting effects is needed."

Recommended by DeAunne Denmark MD PhD: " How did it come to this? A virus a thousand times smaller than a dust mote has humbled and humiliated the planet's most powerful nation. America has failed to protect its people, leaving them with illness and financial ruin. It has lost its status as a global leader. It has careened between inaction and ineptitude. The breadth and magnitude of its errors are difficult, in the moment, to truly fathom.

Recommended by DeAunne Denmark MD Phd: "...the immune system is very complicated. Arguably the most complex part of the human body outside the brain, it's an absurdly intricate network of cells and molecules that protect us from dangerous viruses and other microbes. These components summon, amplify, rile, calm, and transform one another: Picture a thousand Rube Goldberg machines, some of which are aggressively smashing things to pieces. Now imagine that their components are labeled with what looks like a string of highly secure passwords: CD8+, IL-1β, IFN-γ. Immunology confuses even biology professors who aren't immunologists"

Recommended by Sharon Wampler: MD PhD by "By June, clinicians were swapping journal papers, news stories, and tweets describing more than three dozen ways that COVID-19, the disease the coronavirus causes, appears to manifest itself. Now researchers at UC San Francisco and around the world have begun taking a closer look at this dizzying array of symptoms to get at the disease's root causes. They are learning from people inside the hospital and out; people on the brink of death and only mildly sick; people newly exposed and recovered; people young and old, Black, brown, and white. And they are beginning to piece together the story of a virus unlike any known before."

"Welcome to "COVID-19: The CIDRAP Viewpoint." Our intent with the Viewpoint series is to add key information regarding the pandemic, address issues that haven't garnered the attention they deserve, and reflect the unique expertise among the CIDRAP team and our expert consultants. In this periodic series of reports we will address timely issues with straight talk and clarity. And the steps we recommend will be based on our current reality and the best available data. Our goal is to help planners envision some of the situations that might present themselves later this year or next year so that they can take key steps now, while there's still time. Upcoming reports will address supply chains, epidemiologic issues, key areas for research, and other pressing topics."

"American Association for Clinical Chemistry (AACC) President Dr. Carmen Wiley gives an overview of PCR testing, which is the most common type of test for COVID-19 and the one that patients are currently most likely to encounter."