Over the last few months, millions of people have been asked to practice physical distancing to prevent complications and deaths from COVID-19. Some of us are at greater risk than others in this pandemic. Iver Nataraj, a 9-year-old boy with chronic lung disease, born a micro preemie, is one such example. Iver, who is immunocompromised, is especially at risk during these times. COVID-19 presents a new set of challenges for Iver's family because exposure to the coronavirus could be deadly for him.
Iver’s mother, Courtney Nataraj, is a patient/family adviser at NewYork-Presbyterian Hospital. Ms. Nataraj, experiencing fear, isolation and worry in light of COVID-19, was surprised when Iver described feeling peaceful and loved in quarantine, despite the difficulty of isolation. He described feeling happy to wear his protective mask because he felt protected.
As states start to open back up and life resumes, the risk has not gone away. Most people have not seen a doctor for regular visits, and it begs the question: What will it take for us to feel as peaceful, safe and protected as Iver feels in this new reality?
This new COVID-19 environment will be with us for the foreseeable future, and we must think about what measures need to be put in place to ensure patients of all ages feel safe to return to healthcare — for them to trust the system. Patients need us to paint a clear picture of what using healthcare will be like in this new reality, and they need to know what healthcare providers are doing to keep patients and their families safe.
In doing so, it is important to take a fresh look at what matters most to those receiving care and how it will change the patient experience in healthcare. Patients are still getting sick, but they are not going to the hospital as they would have even a short time ago, because they are afraid of coming into contact with COVID-19 at the hospital or in the clinical setting. Patients with chronic or new issues are staying at home, and many tests and procedures have been put on hold. Many patients and caregivers managing chronic conditions don't know if the risk of seeking care outweighs the benefits.
"I was scheduled for a cardiac test, to follow up from my cancer treatment years ago," said Shari Berman, co-chair of The Beryl Institute's Patient Experience Policy Forum (PXPF). "It has been put on hold, and I am not sure when I will feel safe to return to have the test done."
As we consider a future when COVID-19 is still present, but hopefully less of a crisis, the emotional and mental health of patients will need to be addressed. How will we help families feel safe in a waiting room and confident enough to go in for a procedure or to visit an emergency department?
Healthcare organizations are working through these issues. Hospitals that have treated COVID-19 patients are figuring out how to segregate treatment areas as much as possible. Use of public areas, such as waiting rooms and elevators, is being totally rethought. Entire scheduling systems will need to be overhauled to allow for social distancing. Telemedicine is here to stay, and patient expectations have changed with it.
"It's a whole new world," said Rick Evans, chief experience officer at NewYork-Presbyterian Hospital and co-chair of PXPF. "We will be in this situation for a while, and we want our patients and our staff to feel and be safe."
Talking to patients and partnering with them as hospitals and clinics develop new systems and protocols is essential. Oftentimes, hospital administrators think they know what patients want, but hearing from patients and knowing what matters most to them is critical when determining how to proceed. In this crisis, it is more important than ever to ask patients what it would take to make them feel safe.
"I would like to be contacted by my son's doctor, who can walk me through the best way to treat Iver. If I need to bring him in for an appointment, I want him to tell me how safe he feels it is to do so," said Ms. Nataraj. “I also think it would be helpful to connect patients with a peer-to-peer program where they can talk to others who may have the same concerns.”
Because many hospitals have had to restrict visitors, patients and their families are experiencing hospitals and clinics in a totally new way, alone and sometimes confused. The support structure they depend on is absent. With these restrictions likely to continue, the role of the patient and family adviser (PFA) can help guide health system leaders through unchartered territory together, staying focused on a commitment to caring for patients and families with compassion, especially in this uncertain and frightening environment. Some health system leaders have eagerly partnered with PFAs to create innovative solutions to new problems.
"Our patient partners have been essential as we develop new communication tools and are compelled to share difficult messages with our patients and our community. Their insights and feedback, as always, have helped steer us in a different direction than where we were headed many times,” said Sheila Moroney, patient experience officer at Minneapolis-based Hennepin Healthcare.
At Cleveland-based University Hospitals, Chrissie Blackburn, principal for patient and family engagement, describes how her organization has been utilizing patient and family partners during COVID-19. "We partnered directly with our patient family partners to add patient- and family-centered language to our visitation restrictions. We also developed a 'Be Prepared' document to help people start thinking about what they would want should they became seriously ill. Additionally, a 'Get to Know Me' poster was developed by the group, which could be filled out electronically by families and hung in patient rooms. Working with our patient and family partners is a key component to much of what we do at University Hospitals."
Diversity and equity should also be considered as healthcare leaders work to eliminate disparities in care and outcomes and build trust with underserved communities. Initial data from the COVID-19 pandemic already point to alarming disparities in treatment, impact and outcomes. Ensuring that we reach all patients, especially those who are typically underrepresented, is critical. In addition to PFAs, some hospitals use focus groups, and all use surveys to collect information on patient experiences, perspectives and preferences. Going out into the community and meeting patients where they are, even virtually, is a way to ensure that all voices are heard. It is also important that we communicate effectively with patients, using words and explanations they understand on patient portals and in other venues, including social media.
Until a vaccine is widely available, patients and their families will experience fear or anxiety in their healthcare encounters, but patients are also experts in their care and can teach healthcare administrators, staff and clinicians to be more responsive to their needs. Learning from their lived experiences about protecting and caring for themselves and their loved ones will help prepare healthcare systems for responsive, equitable and safe care, during and after COVID-19.
The landscape has changed beneath our feet, and everyone is struggling to find the safest, most compassionate and effective way forward. We believe the answer lies in working together: patients and community members, hospital leaders, infection control experts, physicians and others, talking together and figuring out how to stay safe, while ensuring people get the healthcare they need. PXPF, which has always been a collaboration between patients, families and healthcare leaders, believes this paradigm is more relevant than ever to help hospitals and healthcare organizations address the COVID-19 crisis.
Essential to patient safety and confidence is the need to:
- Maintain a safe environment.
- Test and screen patients and staff for COVID-19.
- Use telemedicine and virtual means to both provide treatment and communicate with patients and families.
- Develop more family-friendly visitation policies in the new COVID reality.
- Communicate frequently and transparently with patients and families to create a shared understanding of how they can maintain their own safety at home, in their communities and during healthcare visits.
PXPF advocates for policy change to improve the patient experience during and beyond this pandemic. In this environment, we advocate:
- For hospitals and clinics to involve patients and families in the reopening process proactively and extensively. Deliberate efforts must be made to establish dialogue and plan for the future together.
- For government and industry leaders to expand patient access to telemedicine services and to ensure they are covered by Medicare, Medicaid and private insurance. Universal availability of broadband in all communities should also be prioritized to support the above.
- For the entire healthcare and research community to use data to study and address inequities and disparities that have become more apparent during the COVID-19 crisis.
Our collective hope is that health system leaders and patient and family leaders find ways to instill trust and make sure all people, from all backgrounds, feel safe and protected in this new environment, as Iver suggests. The patient and family experience has changed during COVID-19, but with a strengthened partnership between patients and healthcare providers working together, we will find the best path forward.
The Patient Experience Policy Forum (PXPF), supported by The Beryl Institute, is a broad-based and diverse coalition of patients, family members, caregivers and healthcare professionals uniquely led by a balanced board of Patient/Family Partners and senior patient experience leaders. Our purpose and commitment is to advocate for and help shape policy at the national and local levels on issues that directly affect patient and family experience and elevate the human experience in healthcare. We do so through convening policy forums, educating policymakers, sponsoring advocacy events, providing communication updates and publishing calls to action.