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What do people do when they are sick? Often, even before they call a doctor, they go online. And when they’re facing a health crisis or ongoing illness, more people than ever are turning to social media and online communities before, during, and after diagnosis. In fact, 69% of doctors surveyed said many of their patients look up their condition online prior to a consultation, according to Cello Health Insights. Online health communities (OHCs) –also referred to as treatment or disease-state or patient communities – represent a tremendous opportunity for pharmaceutical companies to educate and create goodwill while meeting strategic business objectives.
A vital source of information for a variety of audiences
Patients reach out to online health communities to find sympathy, assistance, and information about their symptoms and conditions. Many are searching for details about the patient journey, so they know what to expect throughout the course of their disease or illness, or use other patients in communities as a filtering mechanism to better understand complex medical information. And, OHCs serve more than just patients. They can also be a source of clear, vetted information for caregivers looking for critical support as well as healthcare providers (HCPs) looking for additional information about a condition.
By creating online health communities, drug makers have an opportunity to connect with their patients and consumers 1-on-1. They offer medicine brands an avenue to provide much-needed factual information and patient-centered care, while generating goodwill in the process. As long as the OHC is aligned to a brand’s marketing objectives, they can be a strategic part of a pharmaceutical company’s marketing strategy.
Online health communities vary based on what they provide
There are four main types of communities, based on who the target audience is and what they are trying to achieve.
Long-term treatment support communities
Long-term treatment support communities form around diseases that are typically ongoing and potentially life-long afflictions such as psoriasis, Huntington’s disease, multiple sclerosis, and Parkinson’s disease. These groups help to address the challenges faced by those who need chronic care. They can also facilitate communication with the medical community and fellow sufferers and support the coordination of care outside of traditional delivery practices.
An excellent example is psoriasisSPEAKS, a patient community forum provided by AbbVie. The page states, “The purpose of this Facebook community is to provide a place of support, encouragement, and information sharing for people living with psoriasis in hopes that they’ll have better conversations with their doctors.”
These communities are an ideal way to for pharma companies to help reinforce medicine routine adherence and maintain treatment for the condition, especially when the treatment is complex. These online spaces can create a community before a product launch or new disease treatment.
Point-of-need communities
These communities focus on a need at a particular time, such as those for people facing cancer, chemotherapy, or ongoing surgeries. Patients seek out these communities when they have fatigued their immediate circle of compassion and they are looking for sympathy, camaraderie, and to be surrounded by others who have experienced the same thing as them. Point-of-need communities elevate the voice of the patient. Patients reach out to these communities because their local community does not understand or have the knowledge about their condition.
An example is HysterSisters, which provides hysterectomy support for women from diagnosis to surgery through recovery and beyond. The site says, “Join to ask your questions in our Hysterectomy Support Forums and browse the Articles and Resources. Members receive access to customized, step-by-step Hysterectomy Checkpoints.”
Another great example of a point-of-need online health community is Pfizer’s Breast Cancer: A Story Half Told. The Facebook community describes itself this way, “A Story Half Told is an initiative by Pfizer in partnership with advocates and healthcare professionals that aims to elevate public understanding of metastatic breast cancer, dispel misperceptions, combat stigma and expand the breast cancer conversation to be more inclusive of MBC.”
For drug makers, point-of-need communities are an avenue that provides excellent goodwill with patients and much-needed specific condition information for the patient and the brand.
Long-diagnosis disease communities
This is when communities change the journey for a patient. A delayed diagnosis can negatively influence overall disease management and the outcome for patients. By leveraging social media and communities to drive an earlier diagnosis, such as for diseases like Alzheimer’s, AS1, or endometriosis, pharmaceutical companies can reduce the diagnosis timeline for patients earlier in their disease journey. These online communities should focus on timely knowledge and early identification of symptoms to educate patients, caregivers and HCPs.
Her Endometriosis Reality is a web site run by AbbVie and targeted to general practitioners. It provides educational resources for physicians to better diagnose their patients and help manage symptoms of endometriosis.
AS1, a Facebook community for sharing information about Ankylosing Spondylitis (AS) from AbbVie, shares information about AS in order to help people have informed conversations with their doctors. In the community members can find a symptoms quiz that helps them understand their condition and have better conversations with their doctors.
Pharma marketers can use these communities to build the total audience for their medicine, as well as reduce the number of patients that are undiagnosed or experience a late diagnosis.
Healthcare provider communities
These groups provide ongoing communication about the treatment and management of diseases directly to healthcare providers – a pharmaceutical company’s conduit to patients. These communities are ideal for diseases that are less common, those that are seeing rapid advances in treatment, or ongoing conditions that are a threat but face waning awareness.
For example, Johnson & Johnson created the Johnson & Johnson Diabetes Institute. It offers continuing education for the disease, since advancements in treatments are rapid and HCPs may have a hard time keeping up with improved treatments.
Making online health communities work for your brand
Whether called online health communities, treatment communities, or disease-state communities, these groups are a smart way for pharmaceutical companies to connect with their patients and consumers. Before launching one, it’s important to understand how a community aligns to a brand’s marketing objectives and how the group will function.
Online health communities and good community management can:

• Provide education to patients, caregivers or healthcare providers, building an audience before a launch
• Deliver empathy and compassion for patients, building goodwill for the brand
• Assist patients and caregivers in diagnosing conditions earlier, creating an audience for a brand
• Provide information to HCPs, increasing medicine sales
• Research value to brands, offering a virtual focus group for insights

These online spaces give pharma companies the ability to have 1-on-1 conversations with patients, caregivers, and HCPs, which can drive patient loyalty and satisfaction. Best of all, they can help improve patient outcomes.
This article was originally published on PharmaTimes.
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