How R&D Teams Can Use Patient Centricity for Clinical Trial Optimization

By Monica St. Claire

In 2014, Tufts Center for the Study of Drug Development performed a comprehensive assessment of the use of social media and digital technology in clinical research. This forward-thinking study revealed that pharmaceutical, biotechnology companies and contract research organizations (CROs) had not implemented strategies to effectively utilize and capitalize on the patient and caregiver content available.1

Today, Inspire’s products and services address these clinical trial optimization essentials. Specifically, our tools provide pharmaceutical and biotechnology companies’ research and development (R&D) teams as well as CROs with patient insights that address 1) protocol design and development 2) patient recruitment and retention 3) adherence to treatments and 4) pharmacovigilance.

Protocol design and development

Almost 60% of all clinical trial protocols have at least one amendment. According to the 2016 Tufts Center for the Study of Drug Development impact study, amendments lower the numbers of patients recruited for clinical trials as well as increase the cost of clinical trials.2 Obtaining input from patients and caregivers early in the protocol development process can prevent many amendments.

Today’s case study from Inspire describes how Inspire helped a life science company obtain valuable insights from patients by using the Inspire Insights: Engage product, In-depth Survey. The client learned how a specific protocol requirement would impact recruitment. See below to download “Clinical Trial Design and Engagement: An Inspire Engage Case Study.

Using the Inspire Insights: Engage product, Virtual Advisory Board provided another client with a long-term opportunity to engage with key patients and caregivers on R&D and trial development. This type of engagement opportunity allows R&D to share preliminary protocol design with patients to learn about unknown barriers embedded in the protocol that could substantially impair recruitment and participation in clinical trials. See “The Virtual Advisory Board Solution“here.

Recruitment and retention

According to a 2014 study in JAMA that reviewed 1,017 rare cancer clinical trials, 25% had been discontinued primarily due to poor recruitment.3 Because Inspire is home to over 200 patient support communities, with a significant number in the rare cancer and disease space, we specialize in finding patients with rare conditions. In “Gaining understanding of the needs of rare cancer patients to enhance clinical trial participation,” we describe the case of a life science company that needed access to and engagement with patients diagnosed with a rare cancer. By co-sponsoring a community on Inspire, the client obtained insights into the needs of an under-studied, difficult-to-reach patient and caregiver population.

Inspire has spent years building engagement and a community of connected patients. Evidence of the power of this investment occurred when Strongbridge BioPharma came to Inspire to find patients with an extremely rare condition, Primary Periodic Paralysis (PPP).

Only 4,000 to 5,000 individuals diagnosed with PPP live in the US.4 In just four days, Inspire found 15 patients in our communities who completed the background survey. About half of these agreed to participate in research. Using the Inspire Insights: Engage product, Virtual Patient Interviews (VPIs), we captured moments of the rare patient journey.  Through linguistic analyses of the interviews, we not only gleaned the steps of the patient journey but also preserved the descriptive language that enhanced understanding of these very rare patients’ viewpoints.  By mapping these patients’ journey, we provided a glimpse into the lived experience of being a patient with a very rare disease.


What happens in the real world? Using the Inspire Insights: Discover product, Social Listening,  a pharmaceutical client learned about a major treatment complaint that had significant ramifications for adherence to their product. Inspire’s linguists and researchers also discovered, within the proprietary, anonymized, postings made by patients and caregivers in the Bladder Cancer Advocacy Network Support Community on Inspire, a novel idea from patients to administer treatment. See our case study, “Inspire Discover Provides previously unknown patient insights with implications for product use,” to learn more.

Combining the Inspire Insights: Discover product, Social Listening, and both Inspire Insights: Engage products, In-depth Survey and VPI, in on-going research, one device manufacturer acquired insights into the needs of a patient and caregiver population that could be incorporated in device development and evaluation and gained detailed intelligence about competitive products: uses, benefits and shortcomings.


Inspire and Stanford University School of Medicine discovered previously unidentified adverse reactions to chemotherapy in proprietary patient postings on Inspire. Published this year in JAMA, we used an open source machine learning tool called DeepHealthMiner together with natural language processing to learn that patients discuss ADRs much earlier among themselves on social media, than they do elsewhere–an average of seven months before any of these side effects had been reported in medical literature.

Being Online Matters

Patients and caregivers are online, sharing their experiences and learning from each other.  Patients with neurofibromatosis, sarcoidosis, idiopathic pulmonary fibrosis and systemic scleroderma (to name a few) actively search for clinical trials. The average number of characters per post on Inspire (1695 characters) is over 16 times that of the most common post length on Facebook (103 characters). Inspire is the largest repository of English-language patient-created content about diseases on the Internet. Their postings are detailed and relevant to R&D. Our mission is to accelerate medical progress through a world of connected patients and we accomplish this by delivering permission-based access to the most valuable patient populations across the healthcare value chain. Contact us to learn more.

See our case study “Clinical Trial Design and Engagement”

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.


1Industry Usage of Social and Digital Media Communities in Clinical Research. Tufts Center for the Study of Drug Development White Paper, June 2014,

2Amendments Reduce Number of Patients, But at High Cost, Longer Study Times. Tufts Center for the Study of Drug Development Impact Study. January/February, Vol. 18 No.1

3Kasenda,B.,, (2014). Prevalence, Characteristics, and Publication of Discontinued Randomized Trials. JAMA311(10):1045-1052. doi:10.1001/jama.2014.1361