Online health communities connect patients, trial teams

By Jenni Spinner contact

- Last updated on GMT

(aelitta/iStock via Getty Images Plus)
(aelitta/iStock via Getty Images Plus)

Related tags: Patient centricity, patient engagement, Patient recruitment, Patient access

Health Union offers patients dealing with a range of conditions ways to connect with valuable information, research opportunities and each other online.

Lauren Lawhon, chief operating officer of Health Union, spoke with Outsourcing-Pharma about its network of patient communities, and how the connections help further research and drug development.

OSP: Could you please share the ‘elevator presentation’ of Health Union—who you are, what you do, and what sets you apart from other, similar organizations?

LL: Health Union encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. The company develops and operates condition-specific online communities – publishing original, daily content mostly from people living with the condition and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns.

As of March 2020, Health Union’s growing portfolio has reached 31 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Migraine.com.

Health Union’s business model provides solutions for biopharmaceutical companies in media/advertising, marketing research, and clinical trials, enabling companies to reach and engage healthcare consumers, patients and caregivers among any of these online health communities.

OSP: Please tell us a bit about your patient communities—how they’re structured, the conditions of the patients served, how HU operates, etc.

LL: Health Union’s unique, condition-specific online health communities meet people where they are, both literally online and figuratively in their patient journey. The first community, Migraine.com, launched in 2010 with the mission to help people live better with migraine, a chronic and often debilitating health condition.

Ten years later, this truly patient-centric model has scaled and reproduced thriving online communities that serve 31 different health conditions in oncology, auto-immune, neurodegenerative, genetic and rare diseases.

Each community is identified by a condition-specific URL (e.g., LungCancer.net, PlaquePsoriasis.com, H-I-V.net), which becomes the unifying brand for the community across channels and features original, daily content from people living with those conditions. The content is curated in a way that anyone who visits the community will find something relevant to their personal experiences.

Participants can choose to engage with the community on the websites and open and moderated Facebook, Twitter and, in most cases, Instagram accounts. Every community is managed by two members of Health Union’s community development team: one who works with patient advocates on-site content and one who oversees social media and participant engagement.

Patient advocates - real people living with these conditions - are the lifeblood of Health Union’s communities. Advocates contribute to the communities by providing personal content via articles, recipes, cartoons and videos; moderating conversations on the communities’ social channels; or a combination of the two.

As contributors, they provide their unique perspectives and experiences, representing life at different points in the patient journey. Moderators provide a level of empathy and understanding when responding to others’ posts and encouraging progressive engagement within the community. All patient advocates who serve as contributors and moderators are trained and paid for their work.

Health Union’s user experience (UX) team creates custom images, videos and graphics for all of the communities. Every community has a dedicated UX artist who thoroughly understands the condition and provides custom artwork that accompanies most pieces of content. This artwork captures the perspectives, experiences and emotions of the contributors’ articles.

Health Union’s 31 communities address the needs of people living with advanced breast cancer, Alzheimer’s disease, ankylosing spondylitis, asthma, atopic dermatitis, axial spondyloarthritis, bladder cancer, blood cancer, COPD, cystic fibrosis, endometriosis, heart failure, hepatitis C, hidradenitis suppurativa, HIV, inflammatory bowel disease, irritable bowel syndrome, lung cancer, lupus, macular degeneration, migraine, multiple sclerosis, Parkinson's, prostate cancer, psoriasis, psoriatic arthritis, rheumatoid arthritis, sickle cell disease. skin cancer, sleep disorders and type 2 diabetes. More communities are slated to launch throughout 2021 and beyond.

OSP: How does this focused, attentive approach benefit patients?

LL: This approach ensures people living with these chronic health conditions have a safe, supportive environment where they can obtain the information they’re looking for, connect with each other about shared experiences, and know that they are not alone in their patient journeys. With the majority of the content within the websites coming directly from people living with those conditions - all with different patient journeys - there are constant opportunities for other people to think, “Wow, I never thought about that” or “I didn’t think anybody else had that experience.” And continuous engagement and active moderation within social channels strengthen the community atmosphere and help people feel connected to others about their health journeys in ways they might not normally feel.

OSP: How does it benefit clinical trial professionals?

LL: Data collected from large-scale surveys for each of the communities, along with conversations that occur, reveal that the majority of people within the communities are interested in learning about and participating in clinical trials for their conditions. However, they are not always aware of how to find them. Health Union can identify the degree to which we can match patients with appropriate clinical trials by comparing inclusion/exclusion criteria for the trial with data from our communities.

Through this process, we can address an unmet need for patients while simultaneously providing industry partners with an efficient means for finding appropriate participants. Health Union’s communities of qualified patients help industry partners reach the right people at the earliest stages of clinical development to enhance trial design, recruitment tactics and retention efforts, as well as provide opportunities for these patients to be screened as eligible for specific clinical trials.

OSP: How does it help pharma companies?

LL: Health Union’s online health community model provides biopharmaceutical companies with access to the audiences they need, the insights they want, and the proven results they deserve - creating smarter, more effective patient solutions. Health Union’s immersion into the condition experience yields a deep understanding that combines quantitative data, qualitative insight and behavioral analysis of engagement within the community; as a result, the company can utilize a number of market research insights capabilities to help pharma companies better understand all aspects of the patient experience, and build custom media and marketing programs that ensure the advertising is reaching the most relevant audiences, in the most relevant context for health action.

OSP: Can you share how it might benefit other stakeholders?

LL: Health Union’s online health community model is unique in that there is an intrinsic desire to learn more about each condition and how the patient experience within the various communities evolves over time. Therefore, the community development team is always looking for emerging conversation topics and interesting findings from the large-scale, condition-specific In America surveys to understand what people are interested in and want more information about or want to discuss. Health Union is also committed to furthering scientific and clinical conversations about various aspects of life with these chronic conditions by publishing data findings and learnings in established peer-reviewed journals.

OSP: How does HU’s work with patient communities help study teams improve the patient-centricity of their research—and why is that important?

OSP_PatientCentric_HealthUnion_LL
Lauren Lawhon, chief operating officer, Health Union

LL: In the simplest terms, patient-centricity starts with patients. By partnering with companies like Health Union that create deep relationships with patients, clinical researchers can connect with these active, engaged healthcare consumers in ways that tap into every aspect of life with various chronic conditions. It’s impossible to have true patient centricity if patients aren’t involved or don’t have a voice in the process, starting with study planning through to recruitment programs and ongoing activities.

We know that there is high interest within Health Union’s communities to participate in clinical trials, but - for various reasons - only a small number of people have actually participated. A meta-analysis of recent survey data showed that 69% of patients expressed interest in participating in clinical research, but only 12% have ever actually participated. Partnering with clinical trial teams helps them to better understand patients’ experiences, to learn more about their motivations and barriers to participate, and to design study programs that make it easier for people to choose clinical trials as a treatment option.

Another big focus is making sure clinical study partners understand that integrating the patient voice isn’t a one-time occurrence and that it involves constant two-way communication. By establishing a pattern of two-way communication with patients early and often, study sponsors, investigators and others involved in clinical trials are able to meet people where they are and find novel ways to help more patients participate.

OSP: Similarly, what kinds of insights do you gain from the focused patient communities that might be difficult or impossible to gather in other ways?

LL: The ability to dig deep into a condition-specific community - through a combination of quantitative and qualitative data, as well as patient online conversations and behaviors - allows access to both a general understanding of what the patient community as a whole might think or be experiencing and individual perspectives. For example, survey data might find that respondents within a certain age range or at a specific point in their patient journey are more willing than others to consider clinical trial participation.

Conversation prompts on a community’s Facebook page might unearth some hurdles to clinical trial participation, such as not understanding the technology used or lack of awareness about eligibility. And patient advocates might contribute articles that provide a snapshot into their clinical trial experiences and encourage others to share their perspectives in the comments.

OSP: What qualities, challenges and other attributes do the patient communities seem to all share?

LL: Regardless of the condition, people tend to be looking for information, connection or validation/support. While every patient journey is different, the desire to learn, connect and share is pervasive, whether they’re looking for next steps after receiving a diagnosis, experiences with a certain treatment or tips for dating with a condition. The open format of the communities also allows people to engage in a way that makes them most comfortable. They can engage passively or actively by looking, liking, sharing or commenting. It also allows them to connect with people who might share their experiences and perspectives.

We have also found that various aspects of quality of life, which can sometimes be overlooked or forgotten about during HCP appointments or conversations, can take center stage within each of our communities. Topics like dating, work and social life are all important and can be impacted by a chronic health condition.

People look to their healthcare professionals for information about medical treatments; they look to others with the condition for advice and support for the day-to-day challenges of life with a chronic health concern.

OSP: Can you share any insight on how the communities are different? Please feel free to share anecdotes if you feel comfortable.

LL: The benefit of Health Union’s community model is that it aptly addresses the needs of any condition while allowing for content and engagement to be modified for a community’s special needs. While each community is created and managed in a consistent way, they each tend to take on a personality of their own based on the wants and preferences of the community, as well as nuances of the specific health condition. 

Based on the condition, content and conversation topics can differ. Communities with older populations, such as BladderCancer.net or COPD.net, have a number of different needs than those with younger populations; this includes both the type of content and how it is surfaced, as well as what social media channels they are more likely to use.

A community with emerging breakthrough therapies might be more open to content around treatment than communities that haven’t experienced any new treatment categories in many years. Due to physical aspects of the conditions, some communities, such as MacularDegeneration.net, RheumatoidArthritis.net and Migraine.com, might require special consideration to how they consume information.

OSP: Please tell us a bit about your partnerships with organizations like the MS Association of America, US Pain Foundation and others—what are those professional relationships like, and what do the collaborations achieve?

LL: Health Union actively cultivates partnerships and relationships with organizations that align to the specific needs of the people who participate in our online health communities. The nature of these relationships varies and can include sharing resources, working together on programs and initiatives and assisting in reaching out to different populations within a specific community. By working hand-in-hand with some of these organizations, Health Union aims to show the important role that online health communities can play in any patient’s journey.

 Health Union also participates in various public health conferences, charitable events, such as 5K runs, and social media initiatives for organizations that align with the company’s various online health communities.

OSP: Your surveys are fascinating—could you please tell us how they benefit stakeholders, and what factors contribute to decisions about the topics?

LL: Health Union’s In America surveys are large-scale syndicated research studies fielded regularly across each of our condition-specific online health communities (e.g., Multiple Sclerosis In America, Bladder Cancer In America). Although individual questions, wording and other factors differ based on the condition, each survey covers topics that comprehensively span the patient journey, such as demographics, symptoms and side effects, HCP relationships, treatment experience and quality of life.

The surveys are designed to provide a comprehensive landscape of the condition experience, from the perspective of the patient (and caregivers, depending on the condition). Designing the survey to meet respondents’ needs allows Health Union to report back to the communities on the individual, common and unusual experiences that occur throughout the journey.

These surveys also offer the pharma industry unique insight into the lived experiences of people impacted by these conditions. The In America surveys offer countless opportunities to answer business questions and inform the development of solutions that are mutually beneficial to patients and healthcare business partners.

For communities that have been around for a while, we now have multiple years of data that can help Health Union trend how perspectives and experiences have changed over time with changes to the treatment and care landscape.

OSP: Do you have anything to add about HU, patient communities, collaborations with organizations, or patient-centric trials?

LL: Online health communities have proven to be important sources of support for people living with chronic health conditions. Internal research published in 2020 in the peer-reviewed Journal of Medical Internet Research validated the notion that people with chronic health conditions want to engage online, using social media in particular, and find value in supporting and sharing their experiences with others living with the same health condition.

Specifically, 58% of analyzed comments represented expressions of social support for others, demonstrated through information-sharing, expressions of empathy and encouragement to others. Active moderation of these communities helped to maintain a safe environment that presents balanced and medically accurate information, which is a common concern of social and peer support for health conditions.

As PlaquePsoriasis.com and Psoriatic-Arthritis.com patient advocate Alisha Bridges said, “Having a community where you know people can truly and honestly relate to you is just as important as finding an effective treatment.​”

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