COVID-19 Patient Communities

The Pandemic Pivot: How patients and caregivers are adapting during COVID-19

I was recently a guest on the Health Design podcast, hosted by Dr. Moyez Jiwa, a family physician and behavioral design expert based in Melbourne, Australia. We discussed how high-risk patients and their families are facing the COVID-19 pandemic, particularly in the context of newly introduced challenges within the medical and healthcare sectors. Despite struggling with issues such as healthcare rationing and clinical trial disruption, we’re observing the rise of creative solutions to these new barriers among healthcare providers and patients, indicating long-lasting positive shifts within the medical and healthcare industries. Below you’ll find a bit about what we’re learning so far from our patient communities.

Care Rationing

As the Director of Research at Inspire, my team and I have observed online patients and caregivers discuss healthcare rationing most passionately and in the highest volume since the COVID-19 pandemic began. Patients lament how many of their check-ups have been canceled, postponed, or moved to remote consultations. While most of those who need in-person lifesaving treatments continue to receive them, treatments that require prior elective procedures, such as X-rays, scans, and fluoroscopy, are being postponed. This is especially distressing for cancer patients, who worry that delays in such procedures will allow time for tumors to recur or grow.

Care Avoidance

Members of our patient communities acknowledge that the healthcare system will need months, if not years, to heal from the drain of the pandemic. This has led to a pattern of care avoidance – patients with chronic conditions share that they are avoiding hospitals to the best of their abilities because they do not want to further strain the healthcare system or potentially expose themselves to COVID-19. Compounding this challenge is an emerging wave of concern that is warping treatment behaviors and changing patients’ relationship with their treatments. Patients debate whether they should stop or reduce the dosage of their immunosuppressants, given that these medications heighten their risk of acquiring COVID-19. Many patients are ultimately deciding to alter or decrease their medication dosage or frequency, despite subsequently experiencing symptom flare-ups due to decreased medication adherence.

Impacted Clinical Trials

With regard to clinical trials, patients are most concerned about news that clinical trials are being suspended across the country; some have petitioned the National Institutes of Health and specific programs to keep treating enrolled patients. Many patients who are enrolled in trials state they are still receiving treatments, but protocols regarding follow-up visits have changed. For example, trials are canceling non-essential appointments or conducting them remotely, and oral medication is being delivered by couriers or rideshares, and even picked up by caregivers. Similarly, vitals and other diagnostics are being collected remotely or being transferred to labs closer to participants’ residences.

Creative Solutions Generating Hope

Changes like those we’re seeing in clinical trials and remote care reflect a trend of blossoming creative solutions in light of the epidemic, featuring a newfound trust in telehealth, as traditional bedside medicine is replaced with a spectrum of FaceTime therapy sessions and Zoom wellness checkups. Numerous patients describe how their chronic conditions have actually prepared them for this format of care; those who are immunocompromised have been living under general social distancing guidelines for years. For example, a caregiver whose loved one lives with a stage IV Pancreatic Neuroendocrine Tumor (PNET) diagnosis shared, “with the Covid-19 thing, we are pretty much self-quarantining, but we’ve been ‘social distancing’ for most of the 6 years anyway because of those low counts. So he continues as is.” There is a sense of relief among these online patients and caregivers, as their way of life has quickly become destigmatized as the rest of society has needed to adjust to the same restrictions.

The new care environment has also given rise to a fresh wave of patient advocacy, as seasoned patients discuss how they have begun spending more time on patient social networks like Inspire offering advice to those who are newly diagnosed. Although many patients discuss that they now feel like “back burners” in the care system, others say they feel supported by the outpouring of journey sharing and advice from their fellow patients and caregivers. We’re encouraged by these small silver linings and look forward to reporting more positive trends in the wake of the pandemic.