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Increasingly, Medical Affairs teams are innovating their approach to engaging patients and empowering people to better manage their chronic health conditions. This requires meeting patients where they are – and it all starts with listening to better understand their real-world experiences. One great example of this is the work UCB and MyHealthTeam are doing together to support people living with hidradenitis suppurativa (HS).
Patient research conducted last year by the Medical Affairs team at UCB and myHSteam, the patient social network for people diagnosed with HS revealed the striking impact HS has on quality of life. Of 221 myHSteam members surveyed:
- 88% of respondents said they are “uncomfortable with the idea of intimacy.”
- 87% said they feel “stressed, anxious or depressed.”
- 75% reported that the disease “makes it hard to do everyday activities.”
Eric Peacock, co-Founder & CEO, MyHealthTeam
Hidradenitis Suppurativa (HS) is a chronic, debilitating skin disease characterized by deep inflammatory nodules and recurring abscesses and tunnels that typically appear in specific areas of the body (e.g., in the armpits, buttocks, genital area). Members refer to them as “boils” that are painful to the touch, can leak, and emit foul odors. Some members report they often cannot even sit down comfortably, worrying that people will see or smell the leakage. The average time to diagnosis is 10 years – so many patients suffer for a long time before receiving proper treatment for HS.
What’s more, the disease can look different at various stages and on different skin tones. People living with the disease and trying to understand what’s “normal” on their skin are often left with more questions than answers. And, for some, it’s difficult to have open, honest conversations with their doctors about these uncomfortable personal issues.
Following Research with Action to Empower Patients
To address these challenges and empower people living with HS to have more effective conversations with their doctors, myHSteam and UCB launched the HS Resource Center – featuring medically-approved content integrated within myHSteam where anyone experiencing these symptoms can empower themselves with trusted information. The response from the community has been resoundingly positive, with more than 168,000 views this year to-date, and people spending an average of 5 minutes with this educational content.
Content featured within the resource center includes:
- What Is Hidradenitis Suppurativa?: A primer on the condition that helps members better identify and understand symptoms and provides facts that debunk some common misconceptions about HS.
- Quiz: Is this Acne, HS or Something Else?: This interactive quiz poses four simple questions that can help determine whether someone should consult a dermatologist about their symptoms – and is accompanied by photos of what the disease looks like on different body parts and skin tones at different stages.
- Is Your Doctor an HS Expert?: Designed to empower patients to better engage with their healthcare provider and accelerate the average time to diagnosis, this article includes top questions to ask a doctor as well as links to trusted resources that can assist patients in preparing for their next appointment.
- How To Feel Better with HS: Diet: This piece helps people identify potential food triggers that may exacerbate their HS symptoms and provides insights into foods that may help reduce inflammation, empowering people to incorporate new habits into their daily lives.
Encouragingly, 64% of respondents report they “plan to talk with a doctor” after reading these resources – reflecting the importance of accessible, trusted information in inspiring action. As one myHSteam member shared, “This article gave me enough information to seek help from a dermatologist.”
Addressing Patient Questions: Intimacy and HS
Building on this momentum, and in response to the fact that 88% of survey respondents agree with the statement that “HS has made them uncomfortable with the idea of intimacy,” MyHealthTeam recently collaborated with Erin Martinez-Gilliard, a licensed clinical social worker, certified sex therapist, and lecturer at the University of Michigan School of Social Work, to create a video Q&A focused on helping people living with HS to experience intimacy and effectively communicate with their partners.
As one myHSteam member shared, “Dating and being intimate with HS is definitely an issue. But it is not an end or a death; it is only an adjustment.” Throughout the video, Martinez-Gilliard provides actionable information and advice designed to support members on their journey. More than 680 people have already watched the video in its first two months of on-demand availability, underscoring the importance of addressing this topic in a safe space where they’re coming to learn about their condition and connect with others facing similar challenges.
Addressing Patient Questions: Depression and HS
With 87% of survey respondents reporting they agree that “HS has made them feel stressed, anxious or depressed,” MyHealthTeam wanted to build on the success of this first video by collaborating with a mental health expert to bring actionable tips to the community. This recently launched video Q&A with behavioral therapist Eunice Yu, who brings more than 10 years of experience working with children and adults with chronic illnesses and emotional disorders, provides valuable information on identifying, understanding, and coping with depression – while also living with HS.
Looking ahead, we continue to listen to members of the community and are investing in creating more patient education content that will empower people living with HS to live their best lives and effectively make shared decisions with their doctors.
As people continue to rely on digital resources and expand their social connections online, it’s essential we meet them where they are – in order to address their unmet needs. Medical Affairs teams across the pharmaceutical industry are thinking about new ways to engage patients, and education-focused programs delivered in condition-specific social networks are proving a powerful way to accelerate time to diagnosis and treatment.
Eric Peacock is cofounder and CEO of MyHealthTeam, creator of 40+ social networks for people diagnosed with a chronic health condition.