After a Diagnosis, Patients Are Finding Solace—and Empowerment—in a Sensitive Corner of Social Media
Katherine Leon and her dog enjoy nice weather in their backyard in Virginia. Leon went from feeling like she was "wandering in the woods" with doctors who hadn't experienced her spontaneous coronary artery dissection, or SCAD, to starting the world's largest registry for research on the condition.
When Kimberly Richardson of Chicago underwent chemotherapy in 2013 for ovarian cancer, her hip began to hurt. Her doctor assigned six months of physical therapy, but the pain persisted.
She took the mystery to Facebook, where she got 200 comments from cancer survivors all pointing to the same solution: Claritin. Two days after starting the antihistamine, her hip felt fine. Claritin, it turns out, reduces bone marrow swelling, a side effect of a stimulant given after chemo.
Richardson isn't alone in using social media for health. Thirty-six percent of adults with chronic diseases have benefited from health advice on the internet, or know others who have. The trend has likely accelerated during COVID-19. "With increases in anxiety and loneliness, patients find comfort in peer support," said Chris Renfro-Wallace, the chief operating officer of PatientsLikeMe, a popular online community.
Sites like PatientsLikeMe and several others are giving rise to a patient-centered view of healthcare, challenging the idea that MD stands for medical deity. They're engaging people in new ways, such as virtual clinical trials. But with misinformation spreading online about health issues, including COVID-19, there's also reason for caution.
Engaged by Design
Following her diagnosis at age 50, Richardson searched the Web. "All I saw were infographics saying in five years I'd be dead."
Eventually, she found her Facebook groups and a site called Inspire, where she met others with her rare granulosa cell tumor. "You get 15 minutes with your doctor, but on social media you can keep posting until you satisfy your question."
Virtual communities may be especially helpful for people with rarely diagnosed diseases, who wouldn't otherwise meet. When Katherine Leon of Virginia suffered chest pain after the birth of her second son, doctors said it was spontaneous coronary artery dissection, or SCAD, involving a torn artery. But she had no risk factors for heart disease. Feeling like she was "wandering in the woods" with doctors who hadn't experienced her situation, she searched online and stumbled on communities like Inspire with members who had. The experience led her to start her own Alliance and the world's largest registry for advancing research on SCAD.
"Inspire is really an extension of yourself," she said. If designed well, online sites can foster what psychologist Keith Sawyer called group mind, a dynamic where participants balance their own voices with listening to others, maximizing community engagement in health. To achieve it, participants must have what Sawyer called a "blending of egos," which may be fostered when sites let users post anonymously. They must also share goals and open communication. The latter priority has driven Brian Loew, Inspire's CEO, to safeguard the privacy of health information exchanged on the site, often asking himself, "Would I be okay if a family member had this experience?"
The vibe isn't so familial on some of Facebook's health-focused groups. There, people might sense marketers and insurers peering over their shoulders. In 2018, a researcher discovered that companies could exploit personal information on a private Facebook community for BRCA-positive women. Members of the group started a nonprofit, the Light Collective, to help peer-to-peer support platforms improve their transparency.
PatientsLikeMe and Inspire nurture the shared experience by hosting pages on scores of diseases, allowing people to better understand treatment options for multiple conditions—and find others facing the same set of issues. Four in ten American adults have more than one chronic disease.
Sawyer observed that groups are further engaged when there's a baseline of common knowledge. To that end, some platforms take care in structuring dialogues among members to promote high-quality information, stepping in to moderate when necessary. On Inspire, members get emails when others reply to their posts, instead of instant messaging. The communication lag allows staff to notice misinformation and correct it. Facebook conversations occur in real-time among many more people; "moderation is almost impossible," said Leon.
Even on PatientsLikeMe and Inspire, deciding which content to police can be tough, as variations across individuals may result in conflicting but equally valid posts. Leon's left main artery was 90 percent blocked, requiring open heart surgery, whereas others with SCAD have angina, warranting a different approach. "It's a real range of experience," she explained. "That's probably the biggest challenge: supporting everyone where they are."
Critically, these sites don't treat illnesses. "If a member asks a medical question, we typically tell them to go to their doctor," said Loew, the Inspire CEO.
Increasingly, it may be the other way around.
The Patient Will See You Now
"Some doctors embrace the idea of an educated patient," said Loew. "The more information, the better." Others, he said, aren't thrilled about patients learning on their own.
"Doctors were behind the eight ball," said Shikha Jain, an oncologist in Chicago. "We were encouraged for years to avoid social media due to patient privacy issues. There's been a drastic shift in the last few years."
Jain recently co-founded IMPACT, a grassroots organization that networks with healthcare workers across Illinois for greater awareness of health issues. She thinks doctors must meet patients where they are—increasingly, online—and learn about the various platforms where patients connect. Doctors can then suggest credible online sources for their patients' conditions. Learning about different sites takes time, Jain said, "but that's the nature of being a physician in this day and age."
At stake is the efficiency of doctor-patient interactions. "I like when patients bring in research," Jain said. "It opens up the dialogue and lets them inform the decision-making process." Richardson, the cancer survivor, agreed. "We shouldn't make the physician the villain in this conversation." Interviewed over Zoom, she was engaging but quick to challenge the assumptions behind some questions; her toughness was palpable, molded by years of fighting disease—and the healthcare system. Many doctors are forced by that system into faster office visits, she said. "If patients help their doctor get to the heart of the issue in a shorter time, now we're going down a narrower road of tests."
These conversations could be enhanced by PatientsLikeMe's Doctor Visit Guide. It uses algorithms to consolidate health data that members track on the site into a short report they can share with their physicians. "It gives the doctor a richer data set to really see how a person has been doing," said Renfro-Wallace.
Doctors aren't the only ones benefiting from these sites.
Who Profits?
A few platforms like Inspire make money by connecting their members to drug companies, so they can participate in the companies' clinical trials to test out new therapies. A cynic might say the sites are just fronts for promoting the pharmaceuticals.
The need is real, though, as many clinical trials suffer from low participation, and the experimental treatments can improve health. The key for Loew, Inspire's CEO, is being transparent about his revenue model. "When you sign up, we assume you didn't read the fine print [in the terms of agreement]." So, when Inspire tells members about openings in trials, it's a reminder the site works with pharma.
"When I was first on Inspire, all of that was invisible to me," said Leon. "It didn't dawn on me for years." Richardson believes many don't notice pharma's involvement because they're preoccupied by their medical issues.
One way Inspire builds trust is by partnering with patient advocacy groups, which tend to be nonprofit and science-oriented, said Craig Lipset, the former head of clinical innovation for Pfizer. When he developed a rare lung disease, he joined the board of a foundation that partners with Inspire's platform. The section dedicated to his disease is emblazoned with his foundation's logo and colors. Contrast that with other sites that build communities at the direct behest of drug companies, he said.
Insurance companies are also eyeing these communities. Last month, PatientsLikeMe raised $26 million in financing from investors including Optum Ventures, which belongs to the same health care company that owns a leading health insurance company, UnitedHealthcare. PatientsLikeMe is an independent company, though, and data is shared with UnitedHealth only if patients provide consent. The site is using the influx of resources to gamify improvements in health, resembling programs run by UnitedHealth that assign nutrition and fitness "missions," with apps for tracking progress. Soon, PatientsLikeMe will roll out a smarter data tracking system that gives members actionable insights and prompts them to take actions based on their conditions, as well as competitions to motivate healthier behaviors.
Such as a race to vaccinate, perhaps.
Dealing with Misinformation
An advantage of health-focused communities is the intimacy of their gatherings, compared to behemoths like Facebook. Loew, Inspire's head, is mindful of Dunbar's rule: humans can manage only about 150 friends. Inspire's social network mapping suggests many connections among members, but of different strength; Loew hopes to keep his site's familial ambiance even while expanding membership. Renfro-Wallace is exploring video and voice-only meetings to enrich the shared experiences on PatientsLikeMe, while respecting members' privacy.
But a main driver of growth and engagement online is appealing to emotion rather than reason; witness Facebook during the pandemic. "We know that misinformation and scary things spread far more rapidly than something positive," said Ann Lewandowski, the executive director of Wisconsin Immunization Neighborhood, a coalition of health providers and associations countering vaccine hesitancy across the state.
"Facebook's moderation mechanism is terrible," she said. Vaccine advocates in her region who try to flag misinformation on Facebook often have their content removed because the site's algorithm associates their posts with the distortions they're trying to warn people about.
In the realm of health, where accessing facts can mean life or death—and where ad-based revenue models conflict with privacy needs—there's probably a ceiling on how large social media sites should scale. Loew views Inspire as co-existing, not competing with Facebook.
Propagandists had months to perfect campaigns to dissuade people from mRNA vaccines. But even Lewandowski's doctor was misinformed about vaccine side effects for her condition, multiple sclerosis. She sees potential for health-focused sites to convene more virtual forums, in which patient advocacy groups educate doctors and patients on vaccine safety.
Inspire is raising awareness about COVID vaccines through a member survey with an interactive data visualization. Sampling thousands of members, the survey found vaccines are tolerated well among patients with cancer, autoimmune issues, and other serious conditions. Analytics for online groups are evolving quickly, said Lipset. "Think about the acceleration in research when you take the emerging capability for aggregating health data and mash it up with patients engaged in sharing."
Lipset recently co-founded the Decentralized Trials and Research Alliance to accelerate clinical trials and make them more accessible to patients—even from home, without risking the virus. Sites like PatientsLikeMe share this commitment, collaborating with Duke's ALS Clinic to let patients join a trial from home with just two clinic visits. Synthetic control groups were created by PatientsLikeMe's algorithms, eliminating the need for a placebo arm, enabling faster results.
As for Richardson, the ovarian cancer patient, being online has given her another type of access—to experts. She was diagnosed this year with breast cancer. "This time is totally different," she said. On Twitter, she's been direct messaging cancer researchers, whose replies have informed her disease-management strategy. When her oncologists prescribed 33 radiation treatments, she counter-proposed upping the dosage over fewer treatments. Her doctors agreed, cutting unnecessary trips from home. "I'm immuno-compromised," she said. "It's like Russian roulette. You're crossing your finger you won't get the virus."
After years of sticking up for her own health, Richardson is now positioned to look out for others. She collaborated with the University of Illinois Cancer Center on a training module that lets patients take control of their health. She's sharing it online, in a virtual community near you. "It helps you make intelligent decisions," she said. "When you speak your physician's language, it shifts the power in the room."
Podcast: The future of brain health with Percy Griffin
Percy Griffin, director of scientific engagement for the Alzheimer’s Association, joins Leaps.org to discuss the present and future of the fight against dementia.
Today's guest is Percy Griffin, director of scientific engagement for the Alzheimer’s Association, a nonprofit that’s focused on speeding up research, finding better ways to detect Alzheimer’s earlier and other approaches for reducing risk. Percy has a doctorate in molecular cell biology from Washington University, he’s led important research on Alzheimer’s, and you can find the link to his full bio in the show notes, below.
Our topic for this conversation is the present and future of the fight against dementia. Billions of dollars have been spent by the National Institutes of Health and biotechs to research new treatments for Alzheimer's and other forms of dementia, but so far there's been little to show for it. Last year, Aduhelm became the first drug to be approved by the FDA for Alzheimer’s in 20 years, but it's received a raft of bad publicity, with red flags about its effectiveness, side effects and cost.
Meanwhile, 6.5 million Americans have Alzheimer's, and this number could increase to 13 million in 2050. Listen to this conversation if you’re concerned about your own brain health, that of family members getting older, or if you’re just concerned about the future of this country with experts predicting the number people over 65 will increase dramatically in the very near future.
Listen to the Episode
Listen on Apple | Listen on Spotify | Listen on Stitcher | Listen on Amazon | Listen on Google
4:40 - We talk about the parts of Percy’s life that led to him to concentrate on working in this important area.
6:20 - He defines Alzheimer's and dementia, and discusses the key elements of communicating science.
10:20 - Percy explains why the Alzheimer’s Association has been supportive of Aduhelm, even as others have been critical.
17:58 - We talk about therapeutics under development, which ones to be excited about, and how they could be tailored to a person's own biology.
24:25 - Percy discusses funding and tradeoffs between investing more money into Alzheimer’s research compared to other intractable diseases like cancer, and new opportunities to accelerate progress, such as ARPA-H, President Biden’s proposed agency to speed up health breakthroughs.
27:24 - We talk about the social determinants of brain health. What are the pros/cons of continuing to spend massive sums of money to develop new drugs like Aduhelm versus refocusing on expanding policies to address social determinants - like better education, nutritious food and safe drinking water - that have enabled some groups more than others to enjoy improved cognition late in life.
34:18 - Percy describes his top lifestyle recommendations for protecting your mind.
37:33 - Is napping bad for the brain?
39:39 - Circadian rhythm and Alzheimer's.
42:34 - What tests can people take to check their brain health today, and which biomarkers are we making progress on?
47:25 - Percy highlights important programs run by the Alzheimer’s Association to support advances.
Show links:
** After this episode was recorded, the Centers for Medicare and Medicaid Services affirmed its decision from last June to limit coverage of Aduhelm. More here.
- Percy Griffin's bio: https://www.alz.org/manh/events/alztalks/upcoming-...
- The Alzheimer's Association's Part the Cloud program: https://alz.org/partthecloud/about-us.asp
- The paradox of dementia rates decreasing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7455342/
- The argument for focusing more resources on improving institutions and social processes for brain health: https://www.statnews.com/2021/09/23/the-brain-heal...
- Recent research on napping: https://www.ocregister.com/2022/03/25/alzheimers-s...
- The Alzheimer's Association helpline: https://www.alz.org/help-support/resources/helpline
- ALZConnected, a free online community for people affected by dementia https://www.alzconnected.org/
- TrialMatch for people with dementia and healthy volunteers to find clinical trials for Alzheimer's and other dementia: https://www.alz.org/alzheimers-dementia/research_p...
Employers can create a culture of “Excellence From Anywhere” to reduce the risk of inequality among office-centric, hybrid, and fully remote employees.
COVID-19 prompted numerous companies to reconsider their approach to the future of work. Many leaders felt reluctant about maintaining hybrid and remote work options after vaccines became widely available. Yet the emergence of dangerous COVID variants such as Omicron has shown the folly of this mindset.
To mitigate the risks of new variants and other public health threats, as well as to satisfy the desires of a large majority of employees who express a strong desire in multiple surveys for a flexible hybrid or fully remote schedule, leaders are increasingly accepting that hybrid and remote options represent the future of work. No wonder that a February 2022 survey by the Federal Reserve Bank of Richmond showed that more and more firms are offering hybrid and fully-remote work options. The firms expect to have more remote workers next year and more geographically-distributed workers.
Although hybrid and remote work mitigates public health risks, it poses another set of health concerns relevant to employee wellbeing, due to the threat of proximity bias. This term refers to the negative impact on work culture from the prospect of inequality among office-centric, hybrid, and fully remote employees.
The difference in time spent in the office leads to concerns ranging from decreased career mobility for those who spend less facetime with their supervisor to resentment building up against the staff who have the most flexibility in where to work. In fact, a January 2022 survey by the company Slack of over 10,000 knowledge workers and their leaders shows that proximity bias is the top concern – expressed by 41% of executives - about hybrid and remote work.
To address this problem requires using best practices based on cognitive science for creating a culture of “Excellence From Anywhere.” This solution is based on guidance that I developed for leaders at 17 pioneering organizations for a company culture fit for the future of work.
Protect from proximity bias via the "Excellence From Anywhere" strategy
So why haven’t firms addressed the obvious problem of proximity bias? Any reasonable external observer could predict the issues arising from differences of time spent in the office.
Unfortunately, leaders often fail to see the clear threat in front of their nose. You might have heard of black swans: low-probability, high-impact threats. Well, the opposite kind of threats are called gray rhinos: obvious dangers that we fail to see because of our mental blindspots. The scientific name for these blindspots is cognitive biases, which cause leaders to resist best practices in transitioning to a hybrid-first model.
The core idea is to get all of your workforce to pull together to achieve business outcomes: the location doesn’t matter.
Leaders can address this by focusing on a shared culture of “Excellence From Anywhere.” This term refers to a flexible organizational culture that takes into account the nature of an employee's work and promotes evaluating employees based on task completion, allowing remote work whenever possible.
Addressing Resentments Due to Proximity Bias
The “Excellence From Anywhere” strategy addresses concerns about treatment of remote workers by focusing on deliverables, regardless of where you work. Doing so also involves adopting best practices for hybrid and remote collaboration and innovation.
By valuing deliverables, collaboration, and innovation through a focus on a shared work culture of “Excellence From Anywhere,” you can instill in your employees a focus on deliverables. The core idea is to get all of your workforce to pull together to achieve business outcomes: the location doesn’t matter.
This work culture addresses concerns about fairness by reframing the conversation to focus on accomplishing shared goals, rather than the method of doing so. After all, no one wants their colleagues to have to commute out of spite.
This technique appeals to the tribal aspect of our brains. We are evolutionarily adapted to living in small tribal groups of 50-150 people. Spending different amounts of time in the office splits apart the work tribe into different tribes. However, cultivating a shared focus on business outcomes helps mitigate such divisions and create a greater sense of unity, alleviating frustrations and resentments. Doing so helps improve employee emotional wellbeing and facilitates good collaboration.
Solving the facetime concerns of proximity bias
But what about facetime with the boss? To address this problem necessitates shifting from the traditional, high-stakes, large-scale quarterly or even annual performance evaluations to much more frequent weekly or biweekly, low-stakes, brief performance evaluation through one-on-one in-person or videoconference check-ins.
Supervisees agree with their supervisor on three to five weekly or biweekly performance goals. Then, 72 hours before their check-in meeting, they send a brief report, under a page, to their boss of how they did on these goals, what challenges they faced and how they overcame them, a quantitative self-evaluation, and proposed goals for next week. Twenty-four hours before the meeting, the supervisor responds in a paragraph-long response with their initial impressions of the report.
It’s hard to tell how much any employee should worry about not being able to chat by the watercooler with their boss: knowing exactly where they stand is the key concern for employees, and they can take proactive action if they see their standing suffer.
At the one-on-one, the supervisor reinforces positive aspects of performance and coaches the supervisee on how to solve challenges better, agrees or revises the goals for next time, and affirms or revises the performance evaluation. That performance evaluation gets fed into a constant performance and promotion review system, which can replace or complement a more thorough annual evaluation.
This type of brief and frequent performance evaluation meeting ensures that the employee’s work is integrated with efforts by the supervisor’s other employees, thereby ensuring more unity in achieving business outcomes. It also mitigates concerns about facetime, since all get at least some personalized attention from their team leader. But more importantly, it addresses the underlying concerns about career mobility by giving all staff a clear indication of where they stand at all times. After all, it’s hard to tell how much any employee should worry about not being able to chat by the watercooler with their boss: knowing exactly where they stand is the key concern for employees, and they can take proactive action if they see their standing suffer.
Such best practices help integrate employees into a work culture fit for the future of work while fostering good relationships with managers. Research shows supervisor-supervisee relationships are the most critical ones for employee wellbeing, engagement, and retention.
Conclusion
You don’t have to be the CEO to implement these techniques. Lower-level leaders of small rank-and-file teams can implement these shifts within their own teams, adapting their culture and performance evaluations. And if you are a staff member rather than a leader, send this article to your supervisor and other employees at your company: start a conversation about the benefits of addressing proximity bias using such research-based best practices.