Taking patient market research to the next level with PatientJourney+

The Inspire community is the largest repository of fully consented patient-created health content on the internet. By participating, Inspire members support one another through their health journeys, and often help to accelerate medical breakthroughs. Posts created within Inspire’s disease-specific communities highlight patient and caregiver needs, concerns, and thought processes. They offer a window into the authentic patient and caregiver perspective for pharmaceutical companies and clinical research organizations, and provide critical guidance for clinical, commercial, and public health initiatives. Many members choose to participate in client sponsored research programs as well, simply for the benefit to their broader health communities.

To help healthcare industry partners harness the power of patient and caregiver insights, Inspire developed Inspire PatientJourney+™. This proprietary solution offered as part of Inspire Insights™ provides direct access to the Inspire platform and relies on advanced methods of data collection to provide a more complete picture of the patient journey.

Helping to lead the way is Rob Ramirez, Inspire’s new chief revenue officer. With over 30 years in healthcare market research, he brings a unique perspective and focused vision for growth in Inspire’s innovative data solutions.

Below, Ramirez reveals how Inspire PatientJourney+™ is taking patient market research to the next level.

Why is access to the Inspire community an integral part of patient market research with Inspire PatientJourney+™?

Ramirez: Inspire has unique, permissioned access to patients in closed, private communities. Each year, roughly 10 million patients and caregivers visit Inspire communities. Many of them become members, allowing for continuous communication throughout their health journey.

Within Inspire’s communities, we have the ability to go both wide and deep. Our audiences include large disease areas such as psoriasis, depression, and heart disease that have more than 750,000 members. But we also have incredibly strong reach to numerous rare disease patient populations. For example, Wilson’s disease has low incidence. However, the Inspire community includes roughly 40% of all patients and caregivers in the United States who suffer from Wilson’s disease. We have similar proportional representation for sarcoidosis patients; and nearly 65% for scleroderma patients, based on US prevalence. We offer something unique, and not everyone can tap into a community like this.

Inspire is a truly authentic patient and caregiver member community. People come to Inspire to connect with one another, not with the main goal of getting into a paid market research study. And that’s a key differentiator between us and everything else that exists.

What does an Inspire PatientJourney+™ study look like?

Ramirez: There are four key phases of a PatientJourney+™ study:

Conducting social listening:

We use social listening to identify milestones in the patient journey and understand how patients feel about their condition, their treatment, and so forth. The insights are the foundation of the next phase of our research, qualitative analysis.
Performing qualitative analysis:

We do this using a myriad of techniques and tools. Our virtual ethnography includes patient posts and one-on-one interviews. We also use longitudinal engagements — patients and caregivers with different needs respond to a moderated subset of the community that’s specific to a particular project.
Quantifying the patient journey:

In this phase, we’re still exploring what unmet needs or sub-populations exist. We use measurables to answer business objectives, such as selecting the correct endpoint to use in a clinical trial or identifying social marketing opportunities. Where are these patients entering the system? Where do they fall out of the system? This step helps focus and prioritize resources on the journey points that make the most sense.
Integrating linked, anonymized clinical data:

We link de-identified patient-reported healthcare data and authentic patient conversations to clinical records. Those records may include claims data, lab values, treatment records — whatever makes sense for the business objective. We do this analysis while fully protecting the privacy of our members. Inspire never shares identified health data or posts. When we look at clinical and user-generated content combined, we not only understand what the patient is reporting, but we can see what action was taken, what was diagnosed, what procedures occurred, and what they were prescribed.

What makes Inspire’s social listening different from social monitoring?

Ramirez: We have linguists who work specifically on lexicon-based sentiment analysis — it helps us understand how patients are feeling, what topics they’re interested in and how they are being talked about.

We can identify unmet needs, understand the treatment experience, and map the patient journey. We use natural language processing to codify the data.

There are other folks who do social listening, but it’s limited to open-source data. We find social listening is especially impactful when we take open social data and combine it with data from Inspire’s communities. The average post in an Inspire community is just under 1,700 characters, versus the average post on Facebook, which is much shorter. That means we can deliver richer data and much deeper insights than is possible using open social media alone.

And Inspire’s communities are organic conversations — we’re not guiding or steering the patients in any way. The research team can go in and understand organically what’s happening. That knowledge helps companies focus their resources in the right areas.

How does incorporating clinical records provide a more complete view of the patient journey?

Ramirez: Classic patient journey studies typically only include basic qualitative and quantitative phases — they identify what patients are saying, who’s saying it, and how they feel about it.

With PatientJourney+, social listening and integration of claims data are unique and proprietary. But it’s the claims data that really creates the “+” in our PatientJourney+™.

When we incorporate clinical outcome assessments, it all comes together to enable a snapshot of the patient that can be refreshed longitudinally, to provide patient-centered evidence, identify unique treatment patterns and opportunities, illuminate burden of illness, and allow for comparative effectiveness. In the end, the Inspire PatientJourney+™ study offers a richer, more holistic view of the patient.

How has Inspire aligned itself to ensure that its patient communities continue to grow?

Ramirez: Inspire currently has more than 200 disease communities and we continue to add new ones.

We have key strategic alliances with the FDA and NIH and some major academic institutions. They provide real credibility for patients.

We also have partnerships with over 100 patient advocacy organizations. These exclusive and reciprocal partnerships build trust and membership growth for us, allowing us access to even more patients who want to discuss their health history.

We believe Inspire offers a unique type of health and wellness support that patients and caregivers can’t find anywhere else — a safe space to share their experiences, ask questions and get information and peer support from others who understand what they’re going through.