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The Role of Online Patient-Oriented Platforms in Dermatology

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A recent study demonstrated the benefits and limitations of PatientsLikeMe for patients with atopic dermatitis and other skin conditions.

PatientsLikeMe website on a smartphone | Image Credit: © piter2121 - stock.adobe.com

Image Credit: © piter2121 - stock.adobe.com

Online patient-oriented platforms, such as PatientsLikeMe (PLM), have become valuable venues for individuals with various diagnoses to share experiences, build community, and find support. Founded in 2005, PLM originally catered to patients with amyotrophic lateral sclerosis (ALS) and has since expanded to over 850,000 members covering more than 2800 health conditions. Featured in over 100 peer-reviewed studies, PLM offers a wealth of patient-generated data and insights, making it a significant resource for both patients and healthcare providers in numerous specialties. Dermatology researchers from across the US took a deep dive into the opportunities and challenges online platforms bring for patients with atopic dermatitis (AD).1-2

Connecting Patients with Similar Diagnoses

Study authors wrote, “Receiving a diagnosis can be a transformative experience, impacting a patient's lifestyle, quality of life, and even their identity.”Platforms like PLM enable patients to interact with others who have similar diagnoses, fostering a sense of community and shared understanding. Patients use PLM to share personal stories and discuss various aspects of their conditions, including symptom onset, severity, resolution, medication effectiveness, side effects, and adherence. This peer-to-peer interaction can be particularly valuable for managing chronic conditions such as AD.

A Closer Look at AD on PLM

A 2018 retrospective study examined the characteristics of PLM users with AD. As of April 2018, 410 PLM users reported having AD, with 90.45% diagnosed by a medical professional and 9.55% self-diagnosed. AD was the primary condition for 61.46% of these users. The majority were women (61%) and aged 30-39 years (32.01%). Common symptoms included stress, fatigue, pain, anxious mood, and depressed mood. Users discussed various management strategies, including nonpharmacological interventions like modafinil for insomnia and music therapy for anxiety.3

Despite these insights, the small number of PLM users with AD (especially for treatment data, n =28) raises questions about the representativeness of the profiles compared to the broader patient population. For example, while some studies report a female predominance in AD, others do not find a gender association. This highlights a limitation of PLM: the data may not be generalizable to the larger patient population due to the self-selected nature of its users.

Generalizability and Demographic Discrepancies

Discrepancies in demographic data are not unique to AD. A larger study of PLM users with systemic lupus erythematosus (SLE) (n =21,101) found that users were predominantly female (97%) and White (68%), which is higher than the proportions observed in real-world samples (82%-93% female and 22%-63% White). Such discrepancies are likely due to the self-selected nature of PLM use, where users tend to be younger, more educated, and more frequently female and non-Hispanic White than the general population. Additionally, women are more likely to use internet sources for health information, which may further skew the data.4

Improving Accessibility and Benefits

Efforts to expand the accessibility and benefits of PLM are ongoing. A cross-sectional retrospective survey conducted in 2016 and 2017 examined the impact of community-focused upgrades sponsored by pharmaceutical partnerships. The survey included 377,625 PLM members, with 7434 completions. Results indicated that a generalized platform improved knowledge, symptom management, and patient activation, with further increases for those with community upgrades. However, the study's cross-sectional design and respondent selection may have introduced biases.5

Challenges and the Risk of Misinformation

While PLM and similar platforms encourage patient advocacy and data-driven discussions, they are not without challenges. The self-selected nature of the user base means that the data may not be representative or generalizable. Additionally, there is a risk of spreading misinformation, as content is not reviewed by medical professionals. This is particularly concerning for patients with complex comorbidities, which are underreported on PLM. Information regarding standard care or interventions to avoid is also lacking.

The Role of Dermatology Providers

Clinicians play a crucial role in mitigating these challenges. By acknowledging and engaging with these forums, providers can help promote community-building and health literacy. They can also develop trust and rapport with patients while cautioning them about the potential for misinformation. Study authors concluded, “While extremely beneficial to many, online platforms like PLM should not be all-encompassing resources, and informed use is paramount.”1

References

  1. Szeto MD, Hook Sobotka M, Woolhiser E, et al. PatientsLikeMe and Online Patient Support Communities in Dermatology. JMIR Dermatol. 2024;7:e50453. Published 2024 Jun 26. doi:10.2196/50453
  2. About Us. PatientsLikeMe. Accessed July 1, 2024. https://www.patientslikeme.com/about.
  3. Rundle CW, Dellavalle RP. PatientsLikeMe and atopic dermatitis: characterizing the atopic dermatitis patient profile. Dermatol Online J. Aug 15, 2018;24(8):13030/qt70k8c9jn.
  4. Nyman E, Vaughan T, Desta B, Wang X, Barut V, Emmas C. Characteristics and symptom severity of patients reporting systemic lupus erythematosus in the PatientsLikeMe online health community: a retrospective observational study. Rheumatol Ther. Mar 2020;7(1):201-213.
  5. Wicks P, Mack Thorley E, Simacek K, Curran C, Emmas C. Scaling PatientsLikeMe via a "generalized platform" for members with chronic illness: web-based survey study of benefits arising. J Med Internet Res. May 07, 2018;20(5):e175.
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