Implementing patient centricity?

By Monica St. Claire

Over 1,000 employees from bio-pharmaceutical, medical device and associated supplier companies responded to the Aurora Project’s recent Patient-Centric Benchmarks Survey. Of those respondents, 91% said patient centricity is important, a 6% increase from 2016. But only 30% believe the industry can make it a reality.

Knowing how to be patient centric seems to be the missing ingredient. Only 22% of respondents agreed with this statement, “We know exactly what and how to teach [patient centricity] to our people.”1

While many articles call patient centricity a “mantra” and “cliché,”2 Inspire remains focused on patients and on sharing patients’ perspectives to improve medical research. Although many only know Inspire for its commitment to connecting patients with each other in community, Inspire is more than community. Here are three reasons Inspire is your company’s ideal consultant in patient centricity.

  1. Inspire is the Internet’s largest repository of English-language, health condition-specific, patient and caregiver generated content.

Since 2005, patients and caregivers have been writing on Inspire about their experiences with cancer, chronic conditions, autoimmune disorders and rare diseases. They have been supporting each other, discussing symptoms, treatments, use of devices, and interactions with industry, contacts with insurance companies, experiences with hospital and medical facilities and communication with physicians and other healthcare providers.

  • Inspire has 225 communities

  • 10 million annual visitors over 4000 per day

  • 1.4 million members

  • 10 million posts

  • 1,695 vs 103 average characters per post on Inspire vs. Facebook

  • 1.4 billion words written by Inspire members

2) Inspire has an entirely new Research Department.

Moving medical research forward means supporting basic and translational research. Inspire’s strong connection with patients and caregivers through its communities and partnerships facilitates research. Add its massive proprietary repository of patient and caregiver generated content containing critical data that cannot be found anywhere else. Leveraging this unstructured content has already uncovered and revealed side effects of treatments, knowledge deficits, unknown treatment challenges, unknown diagnostic challenges. Excavating this resource requires new leadership.

Sara Ray, MA in Linguistics, joined Inspire in January as Inspire’s new Director of Research. Experienced in leading projects and developing methodology across the healthcare space to better inform clients and prioritize the patient’s voice and experience in research, Sara’s worked across a variety of conditions in Oncology, Rare Disease, Autoimmune Disorders, and Mental Health.

Her focus is in qualitative research, including interview moderation and analysis of unstructured patient conversation on social media drawing on Sociolinguistics, Ethnography, Discourse Analysis, and unstructured data analysis. She is leading a team of skilled linguists and research analysts centered on challenges, insights and experiences throughout the patient journey.

3) Inspire has unique and novel toolkits and capabilities.

In online communities, patients and caregivers communicate about care, treatment, side effects and their understanding of disease, in more detail and candor than in the clinical setting. Owing to advances in natural language processing and content analysis using natural sociolinguistic examination, the value of unstructured online communication can be realized. Only through Inspire’s Research Department can Inspire’s vast database be accessed. We add to this access a full-on examination of health and medical related social media across the Internet and call our new offering, Inspire Insights: Discover.

We’ve already published findings utilizing Discover’s toolkit in JAMA earlier this year. Employing Inspire Insights: Discover, another client has uncovered problems with treatment adherence among patients who deprioritize a rare and fatal condition when it is accompanied with comorbidities or other health concerns. Publication of these results is in progress.

Clients can reach out to our members with Inspire Insights: Engage. One client needed quick results on a marketing strategy. Their request came in on Monday – a test of three different messages–and by Friday, using the new Pulse survey product, they received a deliverable providing analysis of the survey and  recommendations that showed them a clear path forward – why messages resonated or didn’t and what kinds of language to use that resonates with patients. Virtual patient interviews can be added to surveys targeting key patients and caregivers.

Finally, our Virtual Advisory Boards are a brand new offering that provides both immediate and long-term recommendations. Look here to learn more about Virtual Advisory Boards.

Finding the pain points for patients helps R&D to focus on and validate targets and understanding their journey and outcomes can improve the quality of candidate drugs. Our pharmaceutical clients are making patient-centricity a cornerstone of their efforts to improve R&D productivity and in so doing, developing the right culture for it to flourish.

Download our case study, The Virtual Advisory Board Solution.

See our case study “The Virtual Advisory Board Solution”

Download case study
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Inspire offers a trusted community to patients and caregivers.  Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice.  In so doing, we support faithful operationalization of patient-centricity.  Take a look at our case studies, eBooks and news outlet coverage.