Lauren Lawhon, chief working officer of Well being Union, spoke with Outsourcing-Pharma about its community of affected person communities, and the way the connections assist additional analysis and drug improvement.
OSP: Might you please share the ‘elevator presentation’ of Well being Union—who you’re, what you do, and what units you aside from different, related organizations?
LL: Well being Union encourages social interactions that evolve into beneficial on-line well being conversations, serving to folks with power situations discover the data, connection, and validation they search. The corporate develops and operates condition-specific on-line communities – publishing authentic, every day content material principally from folks dwelling with the situation and constantly cultivating social dialog – to assist, educate and join hundreds of thousands of individuals with difficult, power well being issues.
As of March 2020, Well being Union’s rising portfolio has reached 31 on-line well being communities, together with LungCancer.web, ParkinsonsDisease.web, MultipleSclerosis.web and Migraine.com.
Well being Union’s enterprise mannequin offers options for biopharmaceutical firms in media/promoting, advertising and marketing analysis, and medical trials, enabling firms to succeed in and interact healthcare shoppers, sufferers and caregivers amongst any of those on-line well being communities.
OSP: Please inform us a bit about your affected person communities—how they’re structured, the situations of the sufferers served, how HU operates, and so forth.
LL: Well being Union’s distinctive, condition-specific on-line well being communities meet folks the place they’re, each actually on-line and figuratively of their affected person journey. The primary group, Migraine.com, launched in 2010 with the mission to assist folks stay higher with migraine, a power and sometimes debilitating well being situation.
Ten years later, this really patient-centric mannequin has scaled and reproduced thriving on-line communities that serve 31 completely different well being situations in oncology, auto-immune, neurodegenerative, genetic and uncommon illnesses.
Every group is recognized by a condition-specific URL (e.g., LungCancer.web, PlaquePsoriasis.com, H-I-V.web), which turns into the unifying model for the group throughout channels and options authentic, every day content material from folks dwelling with these situations. The content material is curated in a approach that anybody who visits the group will discover one thing related to their private experiences.
Contributors can select to interact with the group on the web sites and open and moderated Fb, Twitter and, most often, Instagram accounts. Each group is managed by two members of Well being Union’s group improvement crew: one who works with affected person advocates on-site content material and one who oversees social media and participant engagement.
Affected person advocates – actual folks dwelling with these situations – are the lifeblood of Well being Union’s communities. Advocates contribute to the communities by offering private content material by way of articles, recipes, cartoons and movies; moderating conversations on the communities’ social channels; or a mixture of the 2.
As contributors, they supply their distinctive views and experiences, representing life at completely different factors within the affected person journey. Moderators present a degree of empathy and understanding when responding to others’ posts and inspiring progressive engagement inside the group. All affected person advocates who function contributors and moderators are educated and paid for his or her work.
Well being Union’s person expertise (UX) crew creates customized photos, movies and graphics for the entire communities. Each group has a devoted UX artist who totally understands the situation and offers customized art work that accompanies most items of content material. This art work captures the views, experiences and feelings of the contributors’ articles.
Well being Union’s 31 communities deal with the wants of individuals dwelling with superior breast most cancers, Alzheimer’s illness, ankylosing spondylitis, bronchial asthma, atopic dermatitis, axial spondyloarthritis, bladder most cancers, blood most cancers, COPD, cystic fibrosis, endometriosis, coronary heart failure, hepatitis C, hidradenitis suppurativa, HIV, inflammatory bowel illness, irritable bowel syndrome, lung most cancers, lupus, macular degeneration, migraine, a number of sclerosis, Parkinson’s, prostate most cancers, psoriasis, psoriatic arthritis, rheumatoid arthritis, sickle cell illness. pores and skin most cancers, sleep problems and kind 2 diabetes. Extra communities are slated to launch all through 2021 and past.
OSP: How does this centered, attentive method profit sufferers?
LL: This method ensures folks dwelling with these power well being situations have a protected, supportive atmosphere the place they will receive the data they’re searching for, join with one another about shared experiences, and know that they aren’t alone of their affected person journeys. With nearly all of the content material inside the web sites coming instantly from folks dwelling with these situations – all with completely different affected person journeys – there are fixed alternatives for different folks to assume, “Wow, I by no means considered that” or “I didn’t assume anyone else had that have.” And steady engagement and energetic moderation inside social channels strengthen the group environment and assist folks really feel linked to others about their well being journeys in methods they won’t usually really feel.
OSP: How does it profit medical trial professionals?
LL: Information collected from large-scale surveys for every of the communities, together with conversations that happen, reveal that almost all of individuals inside the communities are focused on studying about and taking part in medical trials for his or her situations. Nevertheless, they aren’t all the time conscious of the way to discover them. Well being Union can establish the diploma to which we are able to match sufferers with acceptable medical trials by evaluating inclusion/exclusion standards for the trial with knowledge from our communities.
By way of this course of, we are able to deal with an unmet want for sufferers whereas concurrently offering business companions with an environment friendly means for locating acceptable members. Well being Union’s communities of certified sufferers assist business companions attain the correct folks on the earliest phases of medical improvement to reinforce trial design, recruitment ways and retention efforts, in addition to present alternatives for these sufferers to be screened as eligible for particular medical trials.
OSP: How does it assist pharma firms?
LL: Well being Union’s on-line well being group mannequin offers biopharmaceutical firms with entry to the audiences they want, the insights they need, and the confirmed outcomes they deserve – creating smarter, more practical affected person options. Well being Union’s immersion into the situation expertise yields a deep understanding that mixes quantitative knowledge, qualitative perception and behavioral evaluation of engagement inside the group; consequently, the corporate can make the most of a variety of market analysis insights capabilities to assist pharma firms higher perceive all elements of the affected person expertise, and construct customized media and advertising and marketing applications that make sure the promoting is reaching essentially the most related audiences, in essentially the most related context for well being motion.
OSP: Are you able to share the way it would possibly profit different stakeholders?
LL: Well being Union’s on-line well being group mannequin is exclusive in that there’s an intrinsic want to study extra about every situation and the way the affected person expertise inside the varied communities evolves over time. Due to this fact, the group improvement crew is all the time searching for rising dialog matters and attention-grabbing findings from the large-scale, condition-specific In America surveys to grasp what individuals are focused on and need extra details about or wish to talk about. Well being Union can be dedicated to furthering scientific and medical conversations about varied elements of life with these power situations by publishing knowledge findings and learnings in established peer-reviewed journals.
OSP: How does HU’s work with affected person communities assist examine groups enhance the patient-centricity of their analysis—and why is that vital?
LL: Within the easiest phrases, patient-centricity begins with sufferers. By partnering with firms like Well being Union that create deep relationships with sufferers, medical researchers can join with these energetic, engaged healthcare shoppers in ways in which faucet into each side of life with varied power situations. It’s unimaginable to have true affected person centricity if sufferers aren’t concerned or don’t have a voice within the course of, beginning with examine planning by way of to recruitment applications and ongoing actions.
We all know that there’s excessive curiosity inside Well being Union’s communities to take part in medical trials, however – for varied causes – solely a small variety of folks have truly participated. A meta-analysis of latest survey knowledge confirmed that 69% of sufferers expressed curiosity in taking part in medical analysis, however solely 12% have ever truly participated. Partnering with medical trial groups helps them to higher perceive sufferers’ experiences, to study extra about their motivations and boundaries to take part, and to design examine applications that make it simpler for folks to decide on medical trials as a therapy possibility.
One other huge focus is ensuring medical examine companions perceive that integrating the affected person voice isn’t a one-time prevalence and that it entails fixed two-way communication. By establishing a sample of two-way communication with sufferers early and sometimes, examine sponsors, investigators and others concerned in medical trials are in a position to meet folks the place they’re and discover novel methods to assist extra sufferers take part.
OSP: Equally, what sorts of insights do you achieve from the centered affected person communities that is likely to be troublesome or unimaginable to collect in different methods?
LL: The power to dig deep right into a condition-specific group – by way of a mixture of quantitative and qualitative knowledge, in addition to affected person on-line conversations and behaviors – permits entry to each a common understanding of what the affected person group as a complete would possibly assume or be experiencing and particular person views. For instance, survey knowledge would possibly discover that respondents inside a sure age vary or at a particular level of their affected person journey are extra keen than others to think about medical trial participation.
Dialog prompts on a group’s Fb web page would possibly unearth some hurdles to medical trial participation, equivalent to not understanding the know-how used or lack of information about eligibility. And affected person advocates would possibly contribute articles that present a snapshot into their medical trial experiences and encourage others to share their views within the feedback.
OSP: What qualities, challenges and different attributes do the affected person communities appear to all share?
LL: Whatever the situation, folks are typically searching for data, connection or validation/assist. Whereas each affected person journey is completely different, the will to study, join and share is pervasive, whether or not they’re searching for subsequent steps after receiving a prognosis, experiences with a sure therapy or suggestions for courting with a situation. The open format of the communities additionally permits folks to interact in a approach that makes them most comfy. They’ll have interaction passively or actively by wanting, liking, sharing or commenting. It additionally permits them to attach with individuals who would possibly share their experiences and views.
We’ve additionally discovered that varied elements of high quality of life, which may generally be missed or forgotten about throughout HCP appointments or conversations, can take middle stage inside every of our communities. Subjects like courting, work and social life are all vital and could be impacted by a power well being situation.
Folks look to their healthcare professionals for details about medical therapies; they appear to others with the situation for recommendation and assist for the day-to-day challenges of life with a power well being concern.
OSP: Are you able to share any perception on how the communities are completely different? Please be happy to share anecdotes for those who really feel comfy.
LL: The advantage of Well being Union’s group mannequin is that it aptly addresses the wants of any situation whereas permitting for content material and engagement to be modified for a group’s particular wants. Whereas every group is created and managed in a constant approach, they every are likely to tackle a character of their very own primarily based on the needs and preferences of the group, in addition to nuances of the particular well being situation.
Based mostly on the situation, content material and dialog matters can differ. Communities with older populations, equivalent to BladderCancer.web or COPD.web, have a variety of completely different wants than these with youthful populations; this contains each the kind of content material and the way it’s surfaced, in addition to what social media channels they’re extra seemingly to make use of.
A group with rising breakthrough therapies is likely to be extra open to content material round therapy than communities that haven’t skilled any new therapy classes in a few years. As a result of bodily elements of the situations, some communities, equivalent to MacularDegeneration.web, RheumatoidArthritis.web and Migraine.com, would possibly require particular consideration to how they devour data.
OSP: Please inform us a bit about your partnerships with organizations just like the MS Affiliation of America, US Ache Basis and others—what are these skilled relationships like, and what do the collaborations obtain?
LL: Well being Union actively cultivates partnerships and relationships with organizations that align to the particular wants of the individuals who take part in our on-line well being communities. The character of those relationships varies and may embody sharing assets, working collectively on applications and initiatives and helping in reaching out to completely different populations inside a particular group. By working hand-in-hand with a few of these organizations, Well being Union goals to indicate the vital function that on-line well being communities can play in any affected person’s journey.
Well being Union additionally participates in varied public well being conferences, charitable occasions, equivalent to 5K runs, and social media initiatives for organizations that align with the corporate’s varied on-line well being communities.
OSP: Your surveys are fascinating—might you please inform us how they profit stakeholders, and what components contribute to choices concerning the matters?
LL: Well being Union’s In America surveys are large-scale syndicated analysis research fielded often throughout every of our condition-specific on-line well being communities (e.g., A number of Sclerosis In America, Bladder Most cancers In America). Though particular person questions, wording and different components differ primarily based on the situation, every survey covers matters that comprehensively span the affected person journey, equivalent to demographics, signs and negative effects, HCP relationships, therapy expertise and high quality of life.
The surveys are designed to offer a complete panorama of the situation expertise, from the angle of the affected person (and caregivers, relying on the situation). Designing the survey to satisfy respondents’ wants permits Well being Union to report again to the communities on the person, widespread and weird experiences that happen all through the journey.
These surveys additionally provide the pharma business distinctive perception into the lived experiences of individuals impacted by these situations. The In America surveys provide numerous alternatives to reply enterprise questions and inform the event of options which can be mutually useful to sufferers and healthcare enterprise companions.
For communities which have been round for some time, we now have a number of years of information that may assist Well being Union development how views and experiences have modified over time with modifications to the therapy and care panorama.
OSP: Do you will have something so as to add about HU, affected person communities, collaborations with organizations, or patient-centric trials?
LL: On-line well being communities have confirmed to be vital sources of assist for folks dwelling with power well being situations. Inside analysis revealed in 2020 within the peer-reviewed Journal of Medical Web Analysis validated the notion that individuals with power well being situations wish to have interaction on-line, utilizing social media particularly, and discover worth in supporting and sharing their experiences with others dwelling with the identical well being situation.
Particularly, 58% of analyzed feedback represented expressions of social assist for others, demonstrated by way of information-sharing, expressions of empathy and encouragement to others. Energetic moderation of those communities helped to take care of a protected atmosphere that presents balanced and medically correct data, which is a standard concern of social and peer assist for well being situations.
As PlaquePsoriasis.com and Psoriatic-Arthritis.com affected person advocate Alisha Bridges mentioned, “Having a group the place you recognize folks can really and actually relate to you is simply as vital as discovering an efficient therapy.”