Virtual patient care has moved from healthcare’s bit player to co-star, and it won’t be giving up that role anytime soon.
As the COVID-19 pandemic swept across the United States last year, healthcare organizations that had been slow to embrace a virtual health model suddenly began implementing virtual care solutions at a breakneck pace. And patients have adapted just as quickly. According to a May 2020 survey of 1,000 patients by Wakefield Research on behalf of software company Kyruus, 72% of respondents had their first-ever virtual care visit during the pandemic, and more than 75% were very or completely satisfied with their virtual care.
What was once a nice-to-have feature is now becoming a core component of patient care. More than half the respondents to the Wakefield Research survey strongly or completely agreed that the availability of virtual care visits improved their level of satisfaction with their provider. And in a May 2020 survey of 2,700 patients worldwide by Accenture, nine out of 10 respondents said their virtual visits resulted in quality of care that was as good or better than before.
“While 2020 forced patients — and healthcare providers — to embrace virtual care as a necessity, 2021 will further solidify the importance of remote care provision," says Jim O’Donoghue, president, S3 Connected Health. “As regions worldwide continue to battle the virus, as well as roll out successful vaccination programs, optimizing vital resources, from medical staff to hospital beds to medicines, remains critical to improving patient outcomes. This means ensuring care takes place in the appropriate setting, which isn’t always a hospital or dedicated care facility. In 2021, we envision digital technologies being more integrated into healthcare services. They allow patients to seek help virtually and self-manage symptoms and conditions, alleviating pressure on HCPs and taking up fewer resources."
According to a recent Health Union survey of 2,210 respondents conducted among people participating in the company’s online health communities, 45% of respondents canceled or postponed regularly scheduled visits with their HCPs during the pandemic, and 37% canceled or postponed routine medical tests or planned to do so in the near future. Although only 9% of respondents had used telehealth prior to the pandemic, nearly half noted they had participated in a virtual visit with a doctor or HCP within the previous four months. The survey also found that those who participated in telehealth were more likely to be concerned about their risks associated with the coronavirus. Additionally, many felt they were at greater risk of contracting coronavirus because of their health or the medications they were taking. At that time, 27% of respondents said they would like to continue using telehealth even after the pandemic. This percentage has increased incrementally in subsequent waves of the survey, suggesting that virtual care, as an alternate channel to receive care among a cohort of people, is likely here to stay.
With telehealth specifically, Amrita Bhowmick, chief community officer, Health Union, says there will likely be steady improvements or enhancements to the model throughout the year as patients determine what works best for them and providers determine how to bring the level of care that meets patient needs and delivers the best outcomes.
Charlotte Jones-Burton, M.D., VP, nephrology, Otsuka America Pharmaceutical, agrees there has been a significant shift in the delivery of patient care and widespread use of telehealth due to the COVID-19 pandemic.
“As we move away from the initial stages of embracing virtual care, we can anticipate an evolution in patient care advancements unlike any we have seen before," Dr. Jones-Burton says. “As this becomes the new normal, I think we will see increased access to health services."
“As with so many kinds of interactions during COVID-19, I think we’ll see interactions between patients, caregivers, and healthcare providers continue to take on a hybrid approach that balances the benefits of both in-person and virtual patient care," says Jayne Gershkowitz, chief patient advocate, Amicus Therapeutics. “Which is the most efficient way to access care based upon the immediate situation or need? Surveys conducted during 2020 in some disease communities, showed that scheduling telehealth appointments was more efficient, visits took place much sooner than previous in-person appointments, and response time from providers was faster."
According to Ms. Gershkowitz, the Rare Barometer COVID-19 European survey, with more than 6,900 respondents in 36 countries living with more than 1,200 disease types, found e-medicine took over from face-to-face wherever possible.
“Fully half of respondents participated in online consultations," she says. “Of those, 98% found prescription via emails useful, 90% found online education tools designed to help manage the rare disease themselves useful, and 90% found online consultation or any other form of telemedicine useful.
“And while the efficiency is appreciated, there is a flip side," she continues. “For some types of visits, including physical or occupational therapies, behavioral health assessments, or hands-on specialty exams such as pulmonary or GI, virtual visits are more difficult. A telehealth survey conducted by the Child Neurology Foundation during the middle part of last year, concluded that while many parents appreciate the access, 35% of parents would not want virtual visits again."
According to Mr. O’Donoghue, his company’s research found that 36% of U.S. patients want to see a virtual model become a reality. “Now is the time to build on these foundations," he says. “In 2021 and in years to come, a move toward a hybrid care model that combines digital health services and in-person treatment will allow better and optimized care amid the pandemic and its aftermath."
A Good Patient Experience
Ms. Bhowmick says there are elements of patient care that will continue to be in-person to optimize the experience for HCPs and patients alike, and 2021 will be a year when both parties continue to identify areas that can be carved out into a more efficient virtual setting, including mobile health and remote patient monitoring, without impacting quality of care. “Our survey data found that 68% of respondents had a positive experience with telehealth, and 39% felt that it was just as good, or even better, than an in-person visit," she says. “Analyzing by different subgroups, women were more likely than men and respondents with lower household incomes were more likely than those with higher incomes to note that telehealth visits were just as good as in-person.
“In terms of compliments and complaints, 14% of respondents noted that telehealth technology was difficult to use," Ms. Bhowmick continues. “In a separate Health Union survey, more than six in 10 respondents who have used telehealth rated convenience as at least somewhat better than in-person office visits. Respondents rated thoroughness of examination much less favorably for telehealth than in-person visits — 9% vs. 47%.
Respondents found in-person and telehealth visits to be roughly the same for a number of measurements, including the quality of conversation and the ability to ask questions or voice concerns."
Still, more people are having positive than negative experiences with virtual care. Dr. Jones-Burton says a recent nationwide survey shows almost 54% of patients felt comfortable using telemedicine services to speak with their provider.
“While there is certainly a learning curve in terms of technology use, as the months wear on and adoption continues, we are already seeing improvements," she notes. “At Otsuka, we took a unique approach to virtual care because it’s imperative our patients know that even in this socially distant world, their care team is accessible, their community is still there, and they will always be supported.
“For example, we are bringing care directly to autosomal dominant polycystic kidney disease (ADPKD) patients through a mobile phlebotomy collection service, where a phlebotomist goes to their home to collect a blood sample required to monitor their liver function," she continues. “We are also providing access to a nurse support group, where trained health professionals can provide support, including answering questions related to product accessibility and reimbursement and connecting patients to local treatment sites in their community."
Dr. Jones-Burton says Otsuka has had an extremely positive response to its ADPKD Peer Mentor Program, available to individuals living with or caring for a loved one who is at risk of ADPKD progression. This safe, convenient tool virtually connects patients or caregivers with a peer mentor so they can share stories and learn from each other’s experiences living with this rare disease.
“We’re pleased to provide these resources to help some of our most vulnerable patient populations and hopefully help ease some of the burden while going through their ADPKD journey during these unprecedented times," she says.
Stacy Hurt, a patient experience consultant, is a Stage 4 colorectal cancer survivor and mother to an intellectually and developmentally disabled son. She says telehealth is something she has wanted for a long time because they are both immunocompromised, and her son has mobility issues.
“My son is 15, and he doesn’t walk or talk or do anything for himself, so getting him to appointments was challenging," Ms. Hurt says. “I live in Pittsburgh, where it gets cold and snowy in the winter, and I would have to lift him off the floor into his wheelchair, get him into the van, then lift him out. And I would ask if we could do his appointments via telehealth and was consistently told no. So, when COVID-19 accelerated these innovations, it was wonderful for me as his mom to be able to use it for various appointments. I have used it for his medical genetics appointments, his neurology appointments, and his physical medicine appointments. And I use it for my own care and cancer surveillance too. I’ve also helped my 75-year-old father navigate a telemedicine appointment for his autoimmune disorder."
Judith Mayer, a Stage 4 breast cancer patient and administrator of a breast cancer group on Facebook, says she has been doing telehealth for a while and finds it has worked well most of the time.
“I get a chemo infusion every three weeks, and I run labs and then reach out to my oncologist based on what those findings are," she says. “I don’t need to see her unless I have a problem, which does happen at Stage 4, but I’m fine with those visits not being in person. I get the results of my labs online, then interact with my physician when I need to."
Ms. Mayer says her elderly mother, who has COPD, was managing her health by emergency room before finally finding a doctor that worked well with her and helped her manage her symptoms via telehealth.
“What he had her do daily was take her temperature and blood pressure, then do her pulse-ox and telemetry," she says. “Then, my mother would phone those into the doctor, and he was able to respond to her directly based on that. It eliminated the emergency room and made her feel more confident in her care."
Ms. Gershkowitz says patients participating in clinical research studies have welcomed having the choice to do assessments in the home rather than having to travel to study sites. “Industry and FDA regulators have long talked about switching to more remote and decentralized clinical trial tools, but that was considered nice to have, not must have," Ms. Gershkowitz says. “COVID made that a must have. By and large, I think patients are positive about this."
Mike Myers, managing director and founder, Cross & Wild, recalls an experience with virtual care his wife recently had during an in-person office visit. “Recently my wife texted her doctor when she arrived at her office," he says. “Office staff texted her a link to forms that she signed on her phone. They then texted her when it was time to come in to see the physician. She didn’t have to sit in a waiting room. She was in and out within 15 minutes. It was awesome, in her words.
“From my own family’s experiences to patient feedback that we’ve received while working with clients, thoughts on virtual care seem to be positive, yet mixed," he further observes. “While the efficiencies with respect to time and the lack of a need to sit in a waiting area with sick people are positive, many people do feel that direct HCP dialogue is occurring less than it used to. While HCPs are likely not doing anything less with respect to patient care, the minimization of softer/non-clinical engagement has left some feeling underserved."
The Virtual Care Journey
While becoming a caregiver and a patient, Ms. Hurt worked in healthcare management for more than 20 years in various functions in physician practice management, operations, sales, marketing, and training. “I was head of training and development for a small drug company when I fell ill with my cancer diagnosis, so I had worked in all functions of healthcare management on the delivery side before being on the recipient consumer side, so I was familiar with healthcare’s inner workings," she says.
In late 2019, Ms. Hurt says she saw that the Healthcare Information Management Systems Society (HIMSS) was starting a digital influencer program and was seeking 10 change makers and thought leaders from different industries to join as digital influencers.
“I knew about HIMSS in my professional work, and now being a caregiver and a patient, I decided to apply for the program," she says. “I thought, they need to hear the patient voice. They really need somebody like me that’s been on both sides of it, and who’s going to really speak for the patient."
Given the global nature of HIMSS, Ms. Hurt was humbly overwhelmed when she was selected. “It was a complete honor," she says. “Through being a digital influencer for HIMSS, I became connected with some major bigwigs in the digital health ecosystem. And so, when we talked about areas of digital health that were important to us, and then of course through COVID-19, my area of interest is telemedicine for people like me, caregivers with disabled children, or disabled family members, who can’t get to the office, or who are worried about being immunocompromised."
Her work at HIMSS also connected Ms. Hurt with a national thought advisory council for telemedicine known as TelemedNow, of which she’s now a committee member. Ms. Hurt says TelemedNow’s mission is to solidify telemedicine as a part of the continuum of care post-pandemic in tandem with in-person care.
“I’ve certainly had my share of appointments in-person under Stage 4 cancer surveillance, which I’m still under close surveillance for, and my son, who just had a a face-to-face follow-up appointment with orthopedics, so that was something that we went in for in person," she says. “I believe that telemedicine and in-person care should be complimentary to one another."
Ms. Mayer agrees that there are times when telehealth has its limits, such as when she had a potential skin infection that was difficult to view via a video call. “That time it didn’t work so well because the doctor just couldn’t get a good look," she says. “There are times when an in-person visit is simply the best way to go."
Dr. Jones-Burton agrees that patients will and still do need to have in-person appointments as well as virtual care.
“In fact, even as the pandemic continues to be a backdrop to everyday life, some patient groups, such as those living with rare diseases like ADPKD, need to commit to routine in-person appointments that allow providers to conduct crucial tests that assess kidney health and disease progression," she says. “Telemedicine will not eliminate the need for in-person visits, but rather refine the traditional way of approaching healthcare. There will need to be a delicate balance to allow for comprehensive patient care."
Ms. Hurt says another reason telemedicine can be a boon for patients is closing the geographical distance, since some people live in rural areas far from their treatment facility. “Also, telemedicine minimizes our carbon footprint, which helps protect the environment," she adds. “But the biggest thing for me that I’m on a mission for, if I can make it happen, is second opinions. I’ve been very vocal about this. Through the advocacy I’ve done in the cancer world, I get tons of patients who live miles and miles from a National Cancer Institute (NCI) treatment center, and they’re being treated through a rural community hospital that maybe doesn’t have access to the latest protocols or technology for treating cancer.
“So, they want to seek a second opinion through an NCI cancer center, but the distance, financial toxicity, or disease severity make that extremely difficult," she continues. “There has to be a way for us to do this digitally so that can safely and privately transmit their records to obtain second opinions through telehealth for better outcomes. That’s my passion project."
Telehealth is emerging in this area, Ms. Hurt notes. “I think that similar to the acceleration we saw in COVID-19, I think that we’re closer than we think we are," she says.
Ms. Gershkowitz believes the changes in virtual patient care are here to stay, but that they will evolve.
“Virtual care options have proved to be safer and more convenient for many patients and families, especially patients who might be immunocompromised or have difficulty traveling," she says. “For patients or caregivers, having a medical option that does not require taking considerable time off from work or school is highly beneficial. Healthcare providers have also realized that reimbursement for virtual health services can help triage patient needs more efficiently and appropriately — using technology to answer more routine queries while saving more complex clinical tasks for in-person assessments."
Ms. Gershkowitz observes that Centers for Medicare & Medicaid Services (CMS) has temporarily changed the definition of “homebound" to include individuals who have a condition that puts them at greater risk of COVID-19, allowing them to receive the Medicare home health benefit. “This is a big plus that many in the rare disease community would like to last," she says.
“Back in June, more than 340 organizations wrote to Congress to request specific statutory changes to ensure patients continue to have access to telehealth services once the public health emergency ends.
“Technology will not solve all our problems, but virtual care — delivered compassionately and not automatically — is one of the leaps in medicine that will outlast the COVID crisis," she says.
The Role of the Payer
“Overwhelmingly, the pandemic has also helped motivate insurers and employers to include these services in benefits and coverage plans given the increased demand for these services," Dr. Jones-Burton says. “While the pandemic has brought about expedited use of virtual patient care, I think we have unleashed major potential in terms of accessibility for delivering care."
Ms. Gershkowitz observes that brick-and-mortar healthcare facilities are the most expensive part of the healthcare system. “Harnessing technology to deliver more care efficiently in the home environment, when you can do so safely and effectively, can enable more providers to practice at the top of their license," she says. “That could lead to an increased use of mid-level practitioners, and more focus on reimbursing for their services. In some instances, home-based treatment can also be safer, avoiding the risk of a hospital-acquired infection. We’ve also seen evidence that palliative care delivered at home has a higher level of satisfaction from families and patients, while also improving outcomes. Reimbursement can help the healthcare system evolve to deliver services that are more personalized, efficient, and convenient."
Through her TelemedNow work, Ms. Hurt says she’s come to find out all the nuances that go into telemedicine between reimbursement, licensing, and policy and now she sees it wasn’t so easy to implement. In terms of reimbursements, is that a state or a national issue? Who’s going to determine a C schedule, and who’s going to own the C schedule on that?
“There is no doubt that increased frequency and more widespread use of telehealth services will bring about questions and hold major structural implications for the current reimbursement models of today’s insurance plans," Dr. Jones-Burton says.
“Currently, there are many inconsistencies between public and private payers that create barriers to the further adoption of telemedicine and all the capabilities available," she continues. “While some of these barriers were removed as a result of necessary adaptation to social distancing and lockdown restrictions in light of the pandemic, virtual care isn’t going anywhere soon, so reevaluation for more permanent implementation is critical. As we look toward a future with telehealth as a mainstay of patient care this will be a major area of focus for learning and evaluation."
Mr. O’Donoghue says in the United States, the impact of increased virtual care provision on traditional reimbursement models has begun, and it’s raising an interesting problem. “As more states require telehealth reimbursement moving forward, federal and state regulations must align to ensure the economics of delivering these services longer term stack up," he says. “During the pandemic, in many cases payers have reimbursed virtual patient care and telehealth services at the same rates as if a patient was attending an in-person visit. Paying in the traditional fashion means the benefits associated with virtual care — cost reductions and more efficient care delivery, for example — are being seen by providers of these services, but not necessarily the payers. This is likely an interim issue. However, now it’s clear digital healthcare is here to stay, new reimbursement models must be developed to properly reflect the differences in cost between physical and virtual care services."
Ms. Bhowmick says since the start of the pandemic, there have been a host of major federal policy changes improving access to telehealth, as well as additional changes implemented by private insurers. This has included reimbursing for an expanded scope of visit-types, including in-home appointments, and allowing providers to leverage a wide variety of technology platforms when conducting virtual visits. “While the increased flexibility around HIPAA may not last forever, some other changes may be here to stay if they provide increased efficiency and positive results, which could lead to continued reimbursement," she says. “For instance, 60% of respondents to a Health Union survey mentioned discussing the continuation of their medication with their healthcare provider during the pandemic. Examples like this show the benefit of telehealth as an important access point for the long term."
“I’m sure market access firms will be pushing for decreased costs as patient visits require less traditional overhead and are typically quicker," Mr. Myers says. “HCPs, however, still consider that they’re providing the same care and focus. I believe that you’ll see both sides fighting accordingly."
Dr. Jones-Burton says given the adoption of virtual care seen in the past year, she expects there will be an increase in providers offering virtual care options, as well as employers promoting their availability in benefit packages. She also believes patient records will become more streamlined through an increasingly widespread use of online patient portals and electronic medical records.
“We can also anticipate an increase in cybersecurity measures to ensure the safety and privacy of patient records," she says. “Since virtual care is here to stay, improvements to these services will be top of mind for all."
According to Greg Reilly, executive VP, customer experience, Outcome Health, because of the sheer number of virtual care/telemed platforms that exist, there will be consolidation through acquisition with the best solutions and technology becoming the industry standard. “There will also be a need to continually improve the virtual health user experience to meet the expectations of the consumer: both patients and healthcare professionals," he says. “Point-of-care content and screens will be more important and visible through hospital systems and multi-site practices, offering virtual waiting rooms with content to support the patient with vaccination information, timely specialty condition advice and education, reminders of health maintenance, and family health needs and opportunities. Point-of-care companies will need to move quickly to create and effectively distribute their content so it is accessible over multiple platforms and screens to a broader set of audiences."
“The virtual care pendulum swung dramatically and fast from one side to the other as a result of the pandemic," Mr. Myers says. “Post-pandemic, I do believe that traditional care will return yet virtual care will continue to be at a level higher than it was utilized prior to the pandemic. The benefits of time and ease of engagement, i.e., no travel, have been experienced by all parties. To some degree, there will be a new norm."
Mr. Myers notes virtual care may continue to grow in the short term in some specialties and disease states, such as dermatology. “As remote monitoring and testing devices continue to be developed and utilized, all specialties, in my opinion, will see virtual care firmly taking hold and being central to ongoing patient care over time," he says.
The move to virtual care has created both opportunities and challenges for patients. “For some patients, particularly those who lack transportation or are located in remote areas, it has helped to increase accessibility to care," says Tara Herington, VP of Cardinal Health Sonexus Access & Patient Support. “Patients who previously might have spent half a day traveling to a doctor appointment on a bus or caravan can now access care easily from their phone or home computer in minutes. But this virtual environment has also created new accessibility challenges for patients without WiFi in their homes. Lack of WiFi not only impacts access to healthcare, but also access to education and employment opportunities. This is a significant societal issue that will continue to impact patients long after COVID is over — and hopefully will be addressed at the national level by policymakers."
As far as chronic or rare diseases go, Ms. Gershkowitz says a hybrid care approach can be safer for those who may be immunosuppressed. It can also be less burdensome for those living in remote areas, or those who are homebound for reasons beyond COVID-19.
“I think we’ll see the evolution and adoption of virtual health technologies, including increased use of connected health tools such as smartphones and other devices for remote assessment enhancing telemedicine as well," she says. “Virtual visits may minimize or in some cases even eliminate the need to travel to a provider’s office or hospital to gain access to care for themselves, a child, or loved one. Perhaps the more experienced patients and caregivers become with the practice of telehealth, the easier it should become to navigate and know how to make the most of a virtual visit, and thereby optimize in-person visits as well. The challenge is that there is no one-size-fits all: in some cases, there is no substitute for an in-person assessment. There also are socioeconomic, geographic, and racial disparities in access to virtual care options — for instance, access to a smart device and a reliable broadband network."
Mr. O’Donoghue concurs, noting that throughout the pandemic, digital healthcare has worked well for those with the means and technology competence to access it. “But as virtual care services become a long-term reality, there is a danger that some will be left behind: those without broadband access, a smartphone, or the confidence, for example," he says.
“However, it is often these groups that could benefit the most. Things like ensuring that underlying broadband is available, and investing in education to help people adapt to this new way of receiving care — in much the same way as we have adapted to online banking, for example — could help overcome initial difficulties. Yet, for those patients unable to use the technologies required to deliver remote care services themselves — for example, pediatric patients or people with limiting conditions — it is crucial that virtual care models are accessible to informal carers, too, so they can help their vulnerable loved ones access the care they need."
Mr. O’Donoghue believes that digital therapeutics (DTx) or therapy management solutions that enable patients and their support network to manage medication or monitor symptoms, or connected devices — wearables or implantables — that require little patient input will be key to improving the patient experience, and their outcomes.
“Though there will always be a need for in-person appointments for patients who need scans, like those with ADPKD, in my opinion, rather than just adapting virtual care we need to address the larger issues of inequity that are inherent to the healthcare system, including the social determinants we know play a large role in predicting health outcomes," Dr. Jones-Burton says. “Closing the gap in access to technology would be a great first step and will ultimately enable more patients to utilize telehealth services, as these issues of access and inequity have only been further brought to light during the pandemic."
“Providing quality care for all patients, including those without the means or technology, is necessary," Ms. Gershkowitz says. “It’s the equity and inclusion that should drive our healthcare systems. Therefore, reimbursement has to evolve to support new care models — new business models — that integrate virtual care for patients.
“We’ve seen that using a ride hailing service to transport patients to routine care appointments improves outcomes and lowers costs for some medically complex or underserved populations," she continues. “That’s a good use of a new technology platform and a social need to improve care access for elderly and other underserved populations with complex health needs. The same can be said for clinical trials — bringing the study to the participant, rather than expecting them to travel to the study site is potentially good clinical practice. It may help generate a more diverse patient cohort, better representation of real-world outcomes, and be able to address more of the social determinants of health. That can be not only cost-effective, but cost-reducing if it enables a clinical study to enroll faster, complete on target, or reduce downstream need for an ICU admission or a hospital bed. Equitable medicine is smart medicine."(PV)
The COVID Factor
The coronavirus outbreak is, in a sense, the spark that lit the fire of change. While practices such as remote and virtual care were initially embraced with a view to better deal with the consequences of the pandemic, S3 Connected Health’s research shows there is hope for long-term change, with 84% of U.S. patients willing to use digital health solutions and connected medical devices in the future, and over half (54%) believing wider use of digital healthcare would positively impact the future of healthcare.
COVID-19 has undoubtedly accelerated the rate at which digital technologies have been incorporated into healthcare systems across the globe, with some experts claiming it condensed a decade’s worth of change into a single week. It’s a change that’s reflected in statistics, too: 95% of patient contact took place face-to-face before the pandemic, but remote-first treatment became the default for patient care almost overnight, with S3 Connected Health’s research showing 38% of U.S. patients feared catching the virus in an in-person clinical setting.
To reduce the risk of virus transmission, the pandemic has sparked the need for further remote care and monitoring. It has replaced routine face-to-face meetings with virtual consultations, enabling clinicians to prioritize in-person sessions for those with more complex needs. In the era of COVID this is even more important for vulnerable patients, such as those with underlying chronic conditions and the eldery. Providing access to virtual care to these groups has become an even bigger priority, enabling ongoing care, health management, and treatment in a safer setting.
S3 Connected Health’s research shows that 42% of U.S. patients deem digital healthcare more convenient than attending in person, enabling them to fit appointments around other commitments. Around one-third also suggest virtual care services such as remote monitoring, at-home care, or video consultations give them easier access to care and treatment than before (36%), provide peace of mind that their health is being managed (36%), and allow them to actively manage their own health (32%), too.
Understandably there are some hesitations, with 30% admitting they miss the human element of physical care, and 25% worried about seeing someone other than their regular physician. However, as pandemic-inflicted restrictions lift, virtual care will have the opportunity to develop in its own right, undefined by COVID-19. As it does, hesitations can be addressed and overcome, leaving the right balance of physical and virtual care to improve patient outcomes and optimize healthcare provision in future.
Patients Virtually Helping Each Other
Judith Mayer, a Stage 4 breast cancer patient, counts patient-support groups as an essential element of virtual care. Her Facebook group, Breast Cancer Straight Talk, which was formed in 2017 with 500 members, now has close to 20,000. She joined the group after her breast cancer diagnosis and quickly became a moderator and administrator, recognizing the importance of patients supporting each other virtually.
Harvard University took interest in the group and conducted a case study to determine if, and how, online communities can have a positive impact on patient outcomes.
“This wasn’t even part of my thinking at the time; we grew so quickly we were just holding on for dear life and figuring out things as we went, but eventually answering the question of how we as a group can positively impact outcomes became my goal," Judith says. “This focus shifted what we did, and how we looked at our internal KPIs. We formed an ad hoc committee, both within our group and with other people I met from Facebook, including physicians and scientists who gave us insights."
With a background in technology, Judith used a human-centered design approach to find answers. “First, I looked at personas," she says. “In the breast cancer world, there are more than 12 different types and subtypes of breast cancer. I began to look at those personas from the point of view of the women, and discovered that triple-negative breast cancer looks a certain way and HER2-positive breast cancer looks a different way."
As Judith started to break down the different types of cancer, she wanted to identify what the patient journeys looked like for each, the demographics, and prognosis. That was the first step.
“The second step was not to be everything to everyone," she says. “When started to identify some of the cancer subtypes, we began to look at other groups that we could refer people to so these women could get the pinpoint support they needed."
What Judith found is that one way in which social media groups help with outcomes is by making people very aware of tumor biology. “We began to teach about cell types and estrogen status and the other markers that come in over the week or two after diagnosis," she says. “This is a period of time when people are very confused, and by us simply saying there are more than 12 different types of cancer can be very freeing for women. We created an environment in which they can begin to think differently about breast cancer, and that’s important. Social media groups can encourage people to understand their status and how that impacts on their treatment."
This type of support was very important to Judith. When she joined Breast Cancer Straight Talk she had been just diagnosed with breast cancer for the second time. Her doctors began to talk differently about her disease, including tumor biology and sequencing, which in her experience was different from what most people think about breast tumors and their removal. Providing information about different tumor types is important to understanding the disease, and can help inform treatment options.
“The other thing our Facebook group does, based on what oncologists told us, is support and encourage women to call their medical teams when they have a problem," she says. “The oncologists I spoke with say women undergoing chemo often have problems and they try to get through it without making it an issue, which can have a direct effect on health outcomes. This became an important issue for us to communicate to our community."
Judith is quick to advise anyone in the group to reach out to their medical team. “They can’t help you if they don’t know there’s a problem," she says. “About 98% of the time they do. We just had someone in the group who said, ‘you literally saved my life.’ Her gallbladder was about to burst. It’s not often that dramatic, but we know we are making a difference."