Chronic disease patients are facing serious risks both from keeping away from necessary care settings, as well as from potential COVID-19 infection. One in five chronic disease patients was already starting to avoid seeking care in physician’s offices and hospitals, according to a survey that started early last week of a panel of 1,300 chronic disease patients across several indications. Part of a broader effort known as the Health Stories Project, surveys will continue to be conducted routinely moving forward.

That comes as patients with many preexisting conditions including diabetes, heart disease and lung disease have been found to be at a higher risk of serious illness with COVID-19 infection, according to the CDC. But as hospitals and doctors become more overwhelmed with COVID-19 demands, chronic disease patients may not be able to receive the care that they need.

Remote consultations

Many patients already are turning to their doctors and each other in an effort to better prepare to navigate the unknown territory ahead. This survey was conducted by Health Perspectives Group, a Seattle-based consultancy focused on patient communication and engagement; it plans to continue fielding surveys roughly every three days to its chronic disease patient panel and is conducting a series of indication-specific webinars that feature patients and providers.

“There are two places patients tend to go: one is the hospitals and physician offices, the other is support groups,” Jeff Forslund, who is the director of Digital Engagement at the Health Perspectives Group, told BioWorld. “We already know that from the first survey we did that 20% are avoiding physician offices and hospitals, with 9% avoiding support groups. But they are still reaching out to each other for support; we have 56% who have reached out to other patients.”

Many chronic disease patients are contacting their doctors by phone or online in an effort to ensure access to necessary medications, as well as to determine any potential elevated risks that they could face in the current environment and to understand if they should take extra precautions to protect themselves from infection.

To make it easier for patients to communicate with their doctors without exposing themselves to unnecessary infection risk, the Department of Health and Human Services has announced that it will ease the enforcement of the health care privacy rules under HIPAA.

“During the COVID-19 national emergency, which also constitutes a nationwide public health emergency, covered health care providers subject to the HIPAA rules may seek to communicate with patients, and provide telehealth services, through remote communications technologies,” the agency said in a statement. “Some of these technologies, and the manner in which they are used by HIPAA covered health care providers, may not fully comply with the requirements of the HIPAA rules.”

It added, “A covered health care provider that wants to use audio or video communication technology to provide telehealth to patients during the COVID-19 nationwide public health emergency can use any non-public facing remote communication product that is available to communicate with patients.”

Video chat services that are not HIPAA compliant, such as Apple Facetime, Facebook Messenger video chat, Google Hangouts video or Skype, are included as appropriate.

Elevated risks

The CDC has specified several conditions that elevate the risk of serious COVID-19 infection; these include blood disorders, chronic kidney disease, chronic liver disease, immuno-suppression, current or recent pregnancy, endocrine and metabolic disorders, heart disease, lung disease and neurological conditions.

As with elderly adults, these chronic disease patients are at the heart of mitigation strategy efforts by that agency as well as federal, state and local governments.

More than one-third of the chronic disease patients surveyed had already discussed the coronavirus with their health care providers. With minimal information available, 44% of respondents also said they have talked to other people who share their condition to address their own concerns while 44% also had helped to calm other patients with their condition.

“We cover more than 440 disease areas in the Health Stories Project and we reach about a half a million people on a monthly basis through that,” said Cheryl Lubbert, president and CEO of Health Perspectives Group. “What we know about our community is that a large number of these people have chronic illnesses, and we know as this COVID-19 situation has cropped up that people who have chronic illnesses in our community wanted to be heard – and they were really pressed for the lack of certainty about what to do.”

“So, we wanted to do a survey to understand more specifically what their needs were and really shine a light on sort of what they were not seeing in the media, so that health care organizations would be able to then help these folks and then look at how people's attitudes and behaviors changed over time.”

The first survey results likely lag current realities a bit, given the rapidly evolving situation. But the chronic disease patients are monitoring the news quite closely, particularly via television and social media.

Even a week ago, most respondents had already anticipated a widespread outbreak of COVID-19 infections this year – with almost 90% expecting it to hurt the economy. Almost three-quarters of respondents expected that their conditions could make them more susceptible to the coronavirus, but young adults were the most skeptical that this was actually the case.

Cancer patients and those with respiratory conditions or infections were among the most likely to be taking early precautions such as skipping events and avoiding public places, while cardiovascular patients were a little laxer. More than four out of five chronic patients reported increased hand-washing.

“As we face this unprecedented global medical event, we are committed to sharing the voices of patients living with chronic diseases through the ongoing survey of Health Stories Project members who have raised a hand to share their experiences and concerns, highlighting their needs that are not being addressed effectively,” summed up Lubbert. “As we repeat the survey over the next days and weeks, we will analyze and share the result across categories and diseases as quickly as possible to provide a real-time snapshot of how the COVID-19 situation is evolving, and hopefully resolving, for these patients.”