Transforming Unstructured Social Media Content to Meaningful Insights: A Three-Prong Strategic Offering to Discover, Engage, and Accelerate Research

An interview with Brian Loew, Founder and CEO, Inspire

Inspire is an organization that has developed and provides an online community for health that connects patients and caregivers in a safe permission-based manner. The online network allows members to connect around the globe to serve as resources for one another, sharing health information, and providing support without regard to location, background or status. Members form a virtual community that reduces the feelings of isolation experienced by those with chronic conditions, cancer, and rare diseases. Inspire is a for-profit company that works with over 100 non-profit patient advocacy organizations as well as all top-20 pharmaceutical and biotech companies as well as NIH, FDA, Mayo, and academic researchers at  Stanford, Yale, Brown, and other universities. Driving this business is the Founder and CEO, Brian Loew.

We contacted Brian to address a few questions about Inspire and its business model and mission.

Q. To familiarize our readers with Inspire, could you please provide a brief summary of Inspire’s business model and mission? For example, for your business model:

• Is this a subscription-based service? Or foundation-funded?
• Does Inspire offer discounts for healthcare providers community care centers? Hospitals? Group Practices?

A: Inspire has two broad missions:

• Connect patient community members and advocates through a network of people who have similar diagnoses and experiences (in life as well as healthcare treatments).
• Help accelerate medical progress by inviting patients to participate in scientific research, clinical trials, and other studies.

Membership in Inspire is free for patients, caregivers, non-profit patient advocacy organizations, and academia. Our revenue comes from commercial organizations, mostly pharmaceutical and biotech companies who pay us for permission-based engagement with focused patient populations.

The key to this model is the idea that that the patient is at the center; (s)he is in control, receiving invitations from Inspire to participate in research by commercial sponsors and deciding participate or not.

Q. Precision medicine is based on using data (markers, clinical laboratory results, in-office observation) to select the most effective treatment for a patient.

• In that regard, how does Inspire enable the practice of clinical medicine?
• Can genetic counsellors or other specialists be members in the network?

A: We gather information about members that they choose to share – clinical data via electronic health records (including genomics), Patient-Reported Outcome Measures (PROMs), and other sources of patient information. When genetic sequencing is involved, we ensure that patients are provided genetic counseling as part of the process.

Q. Is Inspire’s network US-based only? If so, what are the thoughts to extend the network to a global network? Or plans otherwise to extend the network beyond its current status, including supporting other languages?

A: Inspire is global, with members in every country, although 75% of Inspire members live in the U.S.

We work primarily in English and are considering expanding to include other languages. Weare ready from a technology perspective to work in multiple languages and we are open to becoming more familiar with the cultures we would support.

Q. Can you classify broadly the range of topics covered by the members, for example:

• Experience with specific treatments?
• Pharmacovigilance studies, adverse events, or unexpected indications for the treatment (e.g., remission of unrelated conditions)
• Coverage and reimbursement terms by regions?

A: All of the above: Inspire patients and caregivers have written well over one billion words, and discuss their experiences with specific treatments, side effects, off-label use, experiences switching medications, and the factors that help them make decisions about treatments. They also discuss affordability, access to care, reimbursement, disease burden, and quality of life. Since Inspire members share their zip code or international postal code, it is straightforward to make comparisons by region.

In addition to the unstructured words Inspire patients write, they also participate in structured surveys created by Inspire’s in-house research team.

Q. Inspire’s site notes that the network connects patients and caregivers in a safe, permission-based manner. Could you please address:

• How does Inspire ensure privacy and security for these exchanges?
• Does Inspire store these exchanges?
• Does Inspire have a means to check for malicious or false posts?

A: Inspire is a secure platform with state-of-the- art information technology and data handling practices. W store all the content written and otherwise created by members in accordance with GDPR and CCPA compliance. Of utmost importance, Inspire does not ask members to share their real name, street address, or telephone number, and, as such, Inspire is “pseudonymous.” Members have unique, persistent identities, but they do not use their real names. Inspire’s team of human moderators addresses malicious posts and other forms of unacceptable behavior (as determined by internal standards). We do not comment on, or provide advice about, content: Inspire does not position itself as a substitute for a doctor or as an expert to ensure scientific accuracy. We assume the ‘Wikipedia phenomenon’ is in full effect with respect to high-quality content – that is, generally good content pushes out bad.

Q. Does Inspire provide a link or connection directly to open clinical trials (www.clinicaltrials.gov)? Can you  give an example of a clinical trial supported through the Inspire network?

A: We do link to clinicaltrials.gov when mentioning a specific clinical trial. We have supported dozens of clinical trials. One example is “Patient Forward Access to Clinical and Technological Research: Genetic Influences on Lung Cancer and Atopic Dermatitis (PFACTR02).¹ For further information on Inspire and clinical trial policy.²

Q. Could you please provide a case where Inspire catalyzed a trial or otherwise supported members in the network?

A: One recent example is a trial underway – see Pfizer Turns to Health Social Network to Find Patients with Rare Lung Cancer Genetic Variants, Precision Oncology News, Oct 27, 2020, Alison Kanski.

Q. Does Inspire analyze the posted information, e.g.:

• Use artificial intelligence to search unstructured text for information?
• Outcomes-based studies?
• Meta-studies?
• Evidence-based research?

A: We use natural language processing (NLP) to help understand the words patients write. We also invite patients to participate in our own studies and those sponsored by other organizations and researchers.

Q. How does Inspire handle the digital divide – that is, engaging those averse to using digital tools generally or those lacking the technology to join?

A: Unfortunately, that is something we cannot address ourselves. Fortunately, many of our patient advocacy partners do provide resources such as support and expertise by phone and in-person support groups. Inspire helps promote these resources.

Q. Would you like to make any final comments or summarize your thoughts?

A: We recently launched the Inspire Research Accelerator (www.inspire.com/accelerator) which we created to help enable scientific research by inviting patients to participate is studies. In the past, researchers have contacted us to ask for help finding rare groups of patients, and this is our program to help those efforts. This service is free to academics and non-profits.

Thank you, Brian! Good luck with Inspire’s mission.

Posting content

The network currently claims over 100 patient advocacy partners, 2,200,000 members, 3,000,000 reported medical conditions, and 11,000,000 posts. Inspire’s proprietary content consists of over 11 million patient and caregiver-generated posts (maximum post lengths of 1,695 characters vs typically 103 characters).

Brian Loew created Inspire in 2005 with the goal of accelerating life-changing discoveries through engaged patients and caregivers in safe, trusted online social networks. Brian is a frequent speaker and writer on the topics of health-focused social networks and digital health. He sits on the boards of the Robert Packard Center for ALS Research at Johns Hopkins, and New Jersey Goals of Care. He was a “Red Jacket” recipient from PharmaVOICE magazine for his longtime contributions  to the industry, and he recently received the Invisible Disabilities Association’s Corporate Award.

 

References

1. See https://clinicaltrials.gov/ct2/show/NCT04362852?term=pfizer+inspire&draw=2&rank=1.
2. See https://www.inspire.com/about/clinical-trials/.