Telehealth: The Patient Experience during the Pandemic

We asked two patient advocates for their experience with telehealth.

Grace Cordovano is a board certified patient advocate, the Founder of Enlightening Results and the Co-Founder of Unblock Health.

Jen Horonjeff, PhD is the Founder and CEO of Savvy Cooperative

Have you had an experience with telehealth? Was it patient-centric or what would have made it more patient-centric?

Grace: I’ve had a number of different telehealth consults since the state of New Jersey was ordered to socially distance due to COVID-19. Due to being in a hotspot area in a county with some of the highest cases and deaths in the state, many practices and facilities are closed. My telehealth experiences have spanned my own care as a patient, encounters for my children, and for family members for who I am the primary carepartner, as well as encounters for patients I support through my patient advocacy work. Since mid-March of 2020, all of my telehealth experiences across the spectrum of care that I am responsible for or supporting have been simple audio calls or FaceTime. I have not yet encountered the use of a formal telehealth platform for an appointment or consultation.

Interestingly, all the calls were more than enough to answer the questions and concerns at hand. We had a family emergency where a family member narrowly avoided the emergency room thanks to numerous calls with a primary care physician, cardiologist, urgent care center, and the emergency room. Having the option to have your medical questions answered, being guided with credible information and reassurance, and coming up with a plan on the fly, especially during an emergency, in a COVID-19 hotspot area, during a global pandemic virtually vs in-person is certainly a win. Looking back now, the experience was still fragmented. Only 1 person was able to access the medical records electronically: the PCP. This was a massive problem for coordination of care, patient safety, and informed decision-making. In this case, the family member only wanted to go to the local hospital where they have received all of their care as they have all of the patient’s medical records. Unfortunately, that same hospital is flooded with COVID-19 cases. Even the care team advised against going to that hospital and specifically driving further north.

Because of the delicate circumstances, it ­­would have been wonderful to be able to get the emergency room, PCP, cardiologist, the patient, and carepartners together on ONE video call, as opposed to a flurry of multiple audio calls that spanned the window of a few hours.

I don’t consider any of the changes towards implementation of telehealth and virtual consults as patient-centered but rather a necessary change to help me live where I am, in light of my current circumstances. The rapid shift to telehealth and virtual care is 100% a life-focused change.

Jen: I had my first telehealth visit in March 2020. Given that most of my clinical encounters are with specialists, many across state lines, telehealth appointments had not been offered in the past. While the experience was pretty seamless and I was only waiting a few minutes past my appointment time, it was certainly a different experience and gave me pause to realize the world had changed. We need to be cognizant of the power of personal connection, not just if it's the preferred method, but that the absence of it may signal change and loss for those of us who have been used to one way for so long.

Do you think that patients who are immune-compromised will prefer telehealth visits in the future? If so why?

Grace: Absolutely! Though I will say, I highly doubt it will just be immune-compromised patients. Telehealth visits with one’s care team should always be an option as a part of the treatment paradigm. Patients have been asking, begging, for access to virtual care with their doctors and care teams for years. It’s not like all of a sudden, patients just found out about this new telehealth option and are wowed. It has been inaccessible due to misaligned reimbursement frameworks and outdated policies and workflows that did not prioritize real-life patient unmet needs. COVID-19 fast forwarded significant bureaucracy that created major barriers to telehealth adoption.

Jen: There are both tangible as well as indescribable pros and cons to telehealth and in-person visits, and it is tough to be expected to speak on behalf of all immunocompromised patients. That said, after speaking with many patients who fall into these high risk categories, many are concerned about the exposure they face in a hospital. While telehealth appointments can reduce their need to go to the hospital, many still need images, labs, or other treatments that are administered in a hospital, and therefore not able to completely mitigate exposure. This may delay treatments, which is also a source of anxiety for patients.

What concerns do patients have about telehealth? For instance, privacy and security, lack of direct contact with a provider, other concerns?

Grace: Patients worry about missing their doctors call! Wouldn’t a text, where possible, be nice to give people a heads up to expect a call in a few minutes?

Because patients are now more readily able to connect with their regular care team or doctor, they may feel more trusting of the virtual encounter. Some patients who may have had strained relationships with their doctor or care team now welcome the choice to see a different doctor virtually.

Privacy and security are always at the top of people’s minds when it comes to their health information. Many people are concerned about how big tech may be involved in contact tracing and surveillance. Some patients have expressed they are suspicious of what is being done with their information from telehealth encounters for COVID-19 screening. We could certainly do a better job of educating the general public and patients on data use during a pandemic and otherwise.

Because of COVID-19, patients may have difficulty finding a quiet, private space to discuss clinical matters. It can be very difficult to discuss sensitive diagnoses when children are home from school and family may be working from home or unemployed.

Jen: All of the above. It feels as though after this massive roll out of telehealth that vendors feel that we have solved this need, but there are still many gaps. Not everyone has access to the same technology and data plans that enable telehealth visits. Not everyone has a safe space to have an intimate conversation with a provider. Not every type of exam can be done confidently via video or phone, leaving patients with questions and unsure if they have the right treatment plan, or any plan at all.

Are patients receptive to remote monitoring? What obstacles are there for patients to this technology?

Grace: People want to live their best life at home. If there are tools and technologies that can help people do so more easily, people are more than open to trying them. Education, access and affordability, and real-time support are critical for adoption and successful use. Connecting people to peer health support groups that may provide further real-life support and hacks is a true benchmark for success.

Because of the epidemic and mandated social distancing, many patients are separated from their primary carepartners who typically manage their complex care outside of the traditional four walls of medicine. I’m seeing a significant unmet need where carepartners would love to have real-time remote patient monitoring to help them monitor their loved ones’ health when they now can’t be there in person. This goes for when a patient is at home as well as when a patient may be at the hospital as now, most hospitals and health care delivery organizations have strict no visitor policies in place.  Let’s face it, primary carepartners are the care team outside of the traditional 4 walls of medicine. We need to empower them to be able to care for their loved ones to the best of their capabilities. This can help with a smoother discharge and continuity of care thereafter.

This is a pivot and extension from the traditional vision and use of remote-patient monitoring. As a the primary carepartner to two disabled adults who I do not live with, having the ability to monitor my loved ones when I’m not there, whether they are at home or in the hospital, would be extremely helpful in helping me make actionable, informed decisions about their care based on their personalized data.

Jen: Patients are becoming more hip to data privacy, or the lack thereof. It will be important for providers and vendors who deploy technology to support remote patient monitoring to be transparent about their intended use and potential future use of data, and create a roadmap for deploying opt-in models for data use in the future.

Patients also face challenges around integrating remote monitoring into their lives. Tools and protocols for such monitoring need to fit seamlessly into the patient's life so not to overburden them.

Are patients receptive to digital mental health services - teletherapy, relaxation apps and online support groups?

Grace: Many patients and their carepartners are receptive and welcome the availability of such options. I know of many patients and families that have made these digital tools and apps a part of their regular routines. As I reflect on my own self-care and mental health during this pandemic, I can say that I personally have noticed I am getting annoyed by the “Breathe” alerts on my Apple watch. As a working mother, homeschooling two children while trying to get work done, managing the home, and cooking while caring for two disabled adults that are 30 minutes away is a daily challenge. Simple tasks of getting groceries for the multiple families we care for when deliveries are not available is overwhelming. Every time the breathe alert pops up it’s almost as if it is now taunting me. I find myself frustrated that I literally don’t have time to breathe, dismissing the alert. This is immediately followed by guilt for not finding the time to tend to better self-care and my mental health. I know it’s not ideal. I haven’t found that balance yet though I really to want to.

Not too long after the Connected Health Conference last year, I bought the Muse meditation band as part of my plan to be more mindful and meditative this year. I had every intention of incorporating meditation into my routine. I’m sad to report that the Muse band is under my desk, unopened. I see it every day as I pull my desk chair in. Cue the guilt that I still haven’t opened it. I’m not giving up yet but right now, I’m down for the count on digital mental health services and I want to be engaged. I will say that the guilt from NOT engaging in these tools is actually ironically contributing to my stress. Any tips would be greatly appreciated.

Jen: I think the above comments apply. They may be receptive but the above challenges and barriers are still in play. Also of note, just because mental health may not seem like it needs a physical exam, does not mean people don't need in-person services. Through patients we have spoken with, they are angry that resources like dialysis centers are open but in-person mental health services are not, and they are not looked at as life-saving services as they should be to many individuals.

How can patients have a say in how telehealth visits are conducted and how the apps are designed?

Grace: It’s simple: just actually ask patients. Don’t forget to also include the carepartners in these conversations: ask carepartners! Both have unique perspectives, insights, and unmet needs that are essential to consider in the ideation, design, development, launch, and post-launch discussions.

Jen: Step 1: Ask patients. But perhaps Step 0 is that innovators, vendors, and systems need to care and understand the value of co-designing these solutions with patients. The world is changing, and if we don't design solutions with diverse communities in mind, people will get left behind and solutions will not be inclusive of those with some of the most pressing needs. How do we get there? Savvy Cooperative can help!