Rheumatology & the Shifting Patient Landscape

Rheumatologists are often called upon to see patients with unexplained symptoms and mysterious illnesses and to manage disease, sometimes with a dearth of evidence. Patients in rheumatology practices also tend to explore treatment modalities outside of the established medical model, sometimes referred to as fringe medicine. Complementary and alternative medicine practices that comprise fringe medicine have always existed but are now magnified by social media connectivity and greater gains in patient autonomy. To be effective healthcare team members, we must understand the shifting forces that contribute to more patients seeking care for unexplained symptoms and those questioning care that ultimately may be needed.

This article uses two case scenarios to explore concepts of fringe medicine, social media and the changing patient-clinician relationship.

Case 1

You are seeing your patient with long-standing lupus nephritis to discuss medication management. He is a mechanic by trade and has struggled to work for the past five years due to complications of the disease, including pain, medication side effects and disease progression. You discuss initiation of mycophenolate for management of his kidney disease, but he is concerned about starting this medication unless it can be assured that it is polyethylene glycol (PEG) free.

He has stopped multiple medications through the years due to concerns that PEG-containing medications contribute to lupus activity despite multiple discussions with you explaining that no solid, peer-reviewed evidence exists for this. He bases his decisions on his own research via unscientific sources on the internet.

Ultimately, he agrees to treatment with glucocorticoids only.

Case 2

A new patient presents to your clinic for a third opinion regarding diagnosis and management of Sjögren’s disease. She brings a pamphlet of patient information that she received from a Sjögren’s support group and had all of the symptoms circled. Another rheumatologist recommended starting hydroxychloroquine, but she read about adverse reactions on a Facebook group so is hesitant to start treatment.

At the end of the visit, she agrees to start hydroxychloroquine but also requests you have a Lyme test performed because she is concerned the doctors may be missing another explanation for all her ailments.

Discussion

The first patient is engaged in what is known as everyday fringe medicine.¹ This is medicine that has traditionally encompassed a host of remedies, such as herbal practices, hydropathy and others, which are situated at the fringe of generally accepted forms of healthcare. But this concept also captures the blurred boundaries between evidence-based medicine and practice by including both traditional and more modern forms of self-care practices and is not exclusive of one vs. the other.¹

This patient represents those who have an established diagnosis but have more trust in other members of patient online communities and their own health education resources than in physicians.

The second patient represents someone who is a seeker, searching for answers to their own health problems, and is more open to various websites and alternative solutions that appear to provide them with those answers.

Patients pursue answers to health questions, practices and treatments that are not based on validated scientific evidence for many reasons. Patients may have concerns about specific treatments or products; they also may feel that medical research is biased or flawed because it tends to be intertwined with economic and political influences. Others may perceive medicine as exclusive, and sense a lack of accessibility to and a dismissive attitude toward fringe medicine practices. Some patients may be dissatisfied with the care they need. The huge cost of care, especially in the U.S., may drive a patient to explore alternatives to established medical recommendations.²

Perhaps more relevant to this discussion is the perception that medicine’s approach to care is less holistic and less likely to incorporate personalized experiences into population-level recommendations and evidence-based guidelines.¹

We are most familiar with this last concept as it pertains to the COVID-19 pandemic. The frequent changes to recommendations for acute care COVID-19 treatments, prevention and vaccinations sowed the seeds for disinformation and engagement in fringe medicine. On the one hand, the medical establishment proposes claims or guidelines based on the best available evidence, which are then taken as truths by patients. On the other hand, these truths are prone to frequent revision, leading patients to confusion and doubt, and promoting the blurring of boundaries between mainstream medicine and alternatives.

Patients who have sought recommendations through less scientifically rigorous sources and received overtly erroneous health advice have, at times, experienced harm in the process. For example, a man died after he and his wife took chloroquine as a potential treatment for COVID-19. They had heard then-President Trump extol hydroxychloroquine and azithromycin as game changers in 2020. The formulation they took was one they had on their shelf for tending their koi aquarium and was not intended for human consumption.³

News stories about ivermectin as a potential treatment for COVID-19 highlight the confluent forces at play among science, evidence, uncertainty and messaging.

Rise of Social Media

The rise of social media has accelerated the shifting patient-clinician relationship and altered reliance on medical clinicians for information and decision making. Many patients, such as our patient from case two, engage with social media medical communities on Facebook, Twitter, YouTube or specialized platforms including Patients Like Me. These platforms are rich in shared information based on patient experience of disease, illnesses, treatments, clinicians and recovery. Each platform is unique, although complementary to more traditional health news outlets, such as health-focused magazines or websites with generic health-related information.

With social media, patients can exchange information about their symptoms and compare with others’ health data, allowing them to create self-conceived health concepts that inform their relationship of self to their body.^4-6 Some of these movements have generated enough lifestyle and health data to create a norm used to empower patients to take responsibility for their own health. Research has shown that health behaviors, such as vaccine hesitancy, can be tied to individuals’ interactions with the internet, Twitter, Facebook and other media.⁷

Social media certainly has benefits, allowing patients to come to appointments more prepared to think about their health, engage with data and information given to them by their healthcare team members, and feel ready to make important decisions. But as patients come to each encounter with more self-discovered information from sources potentially more trustworthy, the patient-clinician dynamic continues to evolve. The initial patient-clinician relationship was rooted in medical paternalism, in which physicians made decisions on behalf of their patients. Over time, it has evolved to more of a shared decision-making model.⁸

In the past, patients might bring in a page from Prevention magazine or a clip from the newspaper on a new treatment or medical discovery to review with their clinicians. Now patients access internet sources to inform their healthcare decision making and form opinions about their diagnoses or treatment options well before being seen by a healthcare team member.

As Kilbride et al. stated in a 2018 Journal of the American Medical Association article, “Today’s patients, informed by the internet and social media, are increasingly less dependent on their physicians for access to medical information and resources,” and this has a very real impact on their ultimate healthcare decisions and outcomes.⁸

Changes in the roles and experiences of being a patient and participation in the digital era are certainly connected with the overarching shifts in society beyond medicine shaping the current healthcare landscape, and the patient is in the middle of this now as more of a healthcare consumer than a patient.^4,9

Although many of these trends can be empowering, patients will never have the educational background and training that clinicians do to allow them full autonomy in healthcare decision making. Healthcare team members guide patients to make decisions with the assistance of all the informational resources available.

So how can we, as clinicians, be more prepared to bridge this widening gap?

Communicating uncertainty. William Osler once said that “medicine is a science of uncertainty and an art of probability.” Clinicians have the opportunity to clarify unnecessary uncertainty—also known as the knowable unknown—with patients, but also state what is unknown. Although this may cause anxiety among clinicians, and many feel sharing uncertainty with patients can overwhelm and confuse those patients, conveying direct expressions of uncertainty, such as “I don’t know” or “It’s unclear,” can result in higher levels of positive talk, patient engagement and satisfaction.¹⁰

Much is still to be learned about expressing uncertainty to patients, but a 2016 National Academy of Medicine Report, Improving Diagnosis in Health Care, recommends that clinicians share their working diagnosis with patients, including the degree of uncertainty associated with each diagnosis.¹¹

Dispelling misinformation. On the flip side of communicating uncertainty is the need to communicate the truth and dispel medical misinformation, which has been identified by the Surgeon General as a major public health threat. Obviously, this is also the ethical, morally correct and legal thing to do—and, from a clinician’s standpoint, the costs of disseminating misinformation even risks disciplinary action by state boards, according to the Federation of State Medical Boards.

Pivoting in our role as the clinician. As patients consume more external information and present that to their healthcare team members, the relationship of the clinician to the patient changes. The knowledge balance between clinician and patient shifts to a more equal footing, and patients are more empowered to direct their own care.

As clinicians we need to acknowledge that patients will continue to seek medical advice through the internet—no matter what—and will find both accurate and inaccurate information. We need to be prepared to serve more as consultants or advisors in certain circumstances.⁸ We can anticipate what patients may do online and help guide them to websites and internet resources with legitimate information, knowing we will continue to provide access and expertise on higher order diagnostic and therapeutic procedures.

An overarching challenge here will be how to align consumer-driven care with value-based care.

Messaging. Clinicians communicate with patients behind closed doors, via electronic record messaging systems, through phone calls and by letters to other healthcare team members. These offer extremely valuable opportunities to work with individuals and address information or misinformation with the tools we are empowered and trained to use.

Also try taking a step out of your comfort zone to communicate with patients. Join a social media platform on Twitter or Facebook, write an article for the local newspaper or magazine, or volunteer to speak at a community organization or event. These are additional ways to convey critical health information to the community.

In Sum

The landscape of patient access to knowledge, other patients and understanding of rheumatic disease is rapidly changing and will continue to do so while more individuals access ready sources of information. However, much of that information may not guide patients to the correct diagnoses or management strategies. Rheumatologists and rheumatology professionals need to continue to help our patients sort through available information and misinformation to provide expertise on what is certain and what is not yet known, and serve as trusted sources to inform healthcare decision making.

Marissa Blum, MD, MSHPR, is an associate professor of clinical medicine, Division of Rheumatology, University of Pennsylvania, Philadelphia, where she is also currently obtaining her master’s degree in bioethics.

Rachel Dayno, MD, is a rheumatology fellow at the University of Pennsylvania.

Anna Wexler, PhD, is an assistant professor of medical ethics and health policy at the University of Pennsylvania, and is the principal investigator of the Wexler Lab, where she studies the ethical, legal and social issues surrounding emerging technology.

References

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