Through these communities, advocacy groups, industry players and policy makers alike have access to a ready-made cohort of informed and engaged patients.
“Data seems like a cold harsh word in this context, because we are talking about the lives and challenges of people living with a health condition and their caregivers,” says St Claire, who leads Inspire’s internal market research division. “But really it’s about understanding people’s experiences and their needs.”
By hosting communities from across therapy areas, Inspire has the English language’s largest database of patient-generated healthcare content.
The team can use this information to “connect the dots” and truly understand community members’ values and concerns – the things that are “bubbling under the surface and keeping people up at night”, St Claire says.
Of course, every situation is different, but the Inspire team have spotted some general commonalities across therapy areas.
“It’s often driven by the community wanting to share, and a lot of the interaction is driven by questions,” explains St Claire.
The requested information is often disease or treatment related, but it can also be practical advice such as signposting to products or services that can help improve daily living.
St Claire says there is a “real camaraderie and cooperative nature” on display in online patient communities, particularly in rare disease networks.
“It is present on other healthcare-patient support groups and communities, but it’s so palpable when it comes to rare diseases They are much more concentrated to smaller groups, and they are trying to help each other because they know that their situation is different from pretty much everyone else. They know that they have to stick together.”
There is an overarching thirst for information within patient communities, whether they are hosted via platforms such as Inspire or are general social media-based groups.
It means that members are often more than happy to participate in projects and surveys that add to the knowledge base.
Inspire, for instance, has “incredible engagement” from people who want to share their stories and experiences, but that relationship must be reciprocal, St Claire believes.
“By virtue of why they have come to the site, to find and share information, they want to provide their answers and share their experiences. And if we send out a survey to our community, they want to see the result.
“We say to industry partners that if they want to come to our site, engage with and gather intelligence from our members, then we need to inform them of the outcomes.”
Despite the communities’ willingness to share, surveys and interviews are not the sole route to knowledge, and other avenues should be considered first.
Social listening, or looking for patterns in what people share online, should be the first step to any patient-focused research project, according to St Claire. This part of the process, she explains, can usually answer between 60-80% of a client’s questions.
“We use that organic patient activity as a foundation before we do interviews or a survey. It saves time, because you then don’t need to ask as many questions, but you are also able to expand the scope and know how to best use the time you have with patients.
“This is our full-time job, but patients have lives and if they commit to giving us 30, 40 or 60 minutes of their time, let’s not waste it. Let’s be respectful of it.”
Investigators also need to be aware of disparities in language and lexicons – patients will rarely use staple industry phrases such as “unmet need”, for example.
St Claire says: “Every once in a while, you get lucky and have a patient or caregiver say: ‘You know what would be really great? If we had X, Y or Z’. Unfortunately, unmet needs are not always packaged like that.
“Our clients always want to know: ‘What are the unmet needs? How can we do this? How can we support that?’ But one of the challenges of working with unstructured, authentic patient data is they don’t use words like ‘unmet needs’.”
Much of Inspire’s insights work is about bridging the gap between these two different worlds so that clients can “speak the same language” as patients.
“To discover unmet needs, we go through a lot of data and notice patterns in the different stories and experiences that indicate a similar underlying need,” says St Claire.
“The value in analysing these conversations and interactions is that it shows you what is really important to patients and caregivers.”
Being able to put these insights into context is paramount to being able to utilise them effectively, she went on.
“A client could do tons of research, and really have a firm understanding of what it is patients and caregivers want and need, and of how they feel and talk. They can use this to develop the most incredible and resonating patient support.
“But if you don’t know where patients are in the network or on their pathway, how they engage or where they get their information from, it’s an ‘if a tree falls in the woods’ situation. It’s not only about producing that impactful, relevant support, it’s about making sure people can access that.”
The growing popularity of online communities is indicative of an unmet need in itself, so “digital-first” isn’t necessarily the best ethos, she says.
“Sometimes, industry partners are overly focused on digital, rather than the fact that these patients are online in the first place because they struggle to access the support they need offline,” she says, adding that having a great handle on patient experience was not enough by itself.
“The sweet spot is knowing where these patients are, knowing what they need, and being able to provide that in a way they can access it.”
Traditionally, industry has been cautious over the use of social media and unsupervised patient and caregiver discussion. This has been due, in part, to a fear of being associated with misinformation.
St Claire says that balancing the line between moderating content and protecting the autonomy of online communities is a concern, but that the benefits far outweigh the risks.
“Patients and caregivers are doing the best that they can, but with varying levels of health literacy, we do sometimes encounter misinformation.”
Inspire’s forums are overseen by moderators who remove potentially dangerous content, but we also need to give the audience the credit they deserve, she says.
“These patients have to become so sharp and thorough in trying to uncover the information that they need that they become very attuned to what are credible and non-credible sources, studies and physicians. They become more discerning when it comes to information.”
Ultimately, the horse has bolted in terms of online health information, meaning the days of industry shying away from social media and online patient forums have no choice but to be over, St Claire says.
“Patients are already going online. Industry, in general, has realised that this is happening and that they need to understand it.
“I think as more people go online, the industry will become more comfortable, fluid, flexible, and efficient at engaging with them there.”
Her hope, she adds, is that better use of this valuable insights window will enable the healthcare sector to create clearer paths to the high quality, relevant information that people so desperately need.
Amanda Barrell is a health and medical education journalist, editor and copywriter. She has worked on projects for pharma, charities and agencies, and has written extensively for patients, healthcare professionals and the general public.