Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable

Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable By Dana Deighton In the fable of the Ugly Duckling, the duckling feels isolated by his differences until he discovers that he is a swan too. Patients with undiagnosed conditions also feel isolated, with some even describing not being believed by their doctors or even their friends or families. One member with scleroderma shared her story: I spent 27 years seeking help --- every type of specialist, tests, hospitalizations, medications of every type, anything to put a name to my misery, not being treated like an attention-seeking patient. [...]

Patient Support Needs Patient Input

Patient Support Needs Patient Input By Jeff Terkowitz Here’s a patient support marketing scenario: You’re in charge of creating a patient support program that reaches out past the point of prescription. The drug you’re supporting is a molecule that requires long-term adherence to be effective. You’re looking for end-to-end results. You’re undoubtedly considering a range of options from nurse follow-up calls to automated text reminders to remote patient monitoring with wearables. Perhaps you need choose between specialty pharmacies or hubs or are involved in creating a training program so specialty pharmacies can provide the best patient support [...]

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration By Sara Ray What happened when we compared research strategies used to obtain patient insights? We discovered that using multiple strategies is key to gaining usable understandings. In a recent collaboration between Inspire and the FDA, we compared and contrasted patient and caregiver generated online communication with the results of one of FDA’s Voice of the Patient meetings. The Data Sets Inspire’s membership includes over 350,000 patients and caregivers living and coping with rare diseases. In the last three years, there has been 203% growth [...]

Can social media help uncover insights about the patient journey?

Can social media help uncover insights about the patient journey? By Monica St Claire Does patients’ social media content truly reflect the real world experience of patients in general? Can it uncover insights about the patient journey? This question tends to come up when someone is new to this type of research. It’s a good question. Social media’s pervasive presence has been documented by Pew Research, among others, finding that Facebook is used by 74% of Americans on a daily basis, over half saying it is used more than once-a-day, and that 73% of Americans use multiple [...]

Understanding information needs during the patient journey: ovarian cancer

Understanding information needs during the patient journey: ovarian cancer By Kathleen Hoffman, PhD While patients see physicians as the primary and most trusted information resource, research indicates that patients with cancer also seek information elsewhere. Reasons for investigating further include 1) verification or double checking, 2) clarifying what they have learned and even obtaining translations of what they have heard from other patients who have “been there,” 3) being directed by one source to query another source1 and for those who reach out to other patients 4) trust and desire for real world experience in managing expectations. [...]

Rethinking patient engagement in clinical trials: Be part of the solution

Rethinking patient engagement in clinical trials: Be part of the solution By Kathleen D. Hoffman, PhD Seated in the waiting room of a large medical center, I overheard the bright eyed, young man behind the reception desk ask a new patient, “Would you like to learn more about participating in our research?” I smiled and thought, this is part of the solution. But it is a small part. I’ve been going to the same clinic for five years and today is the first time I’ve heard this question. I wondered if anyone would ask me - [...]

Real World Evidence Substantiates the Audience Quality of Inspire’s Membership

Real World Evidence Substantiates the Audience Quality of Inspire’s Membership By Odin Soevik With spending on direct-to-consumer digital advertising at $343 million in 2017, pharmaceutical companies want to know that their money is spent to reach the right patients and caregivers at the right time.1 Reaching a quality audience has been the challenge for online advertising. But now, companies have access to Real World Evidence (RWE), from electronic health records to patient claim records and other “big data” extraction. RWE is being coupled with marketing strategies to determine audience quality.2 Recently, a digital agency for a major [...]

Inspire’s new “Discover” solution delivers unprecedented, real-world patient insights

Inspire’s new “Discover” solution delivers unprecedented, real-world patient insights By Robert Gardner Life science companies can gain a deeper understanding of the patient experience and, in the process, empower their decision-making, through the analysis of unbiased and uncensored discussions occurring publicly on social media and particularly on Inspire. Inspire has something that no other healthcare social network has - Inspire’s proprietary, longitudinal data. Our new solution, Inspire Insights: Discover, is a social listening suite of products combining the real world patient-engagement of Inspire’s patient support communities with other open-source, publicly available, online social media content from [...]

From Research To Action for Patients

From Research To Action for Patients It is exciting to see the results of research providing strong, positive benefits to patients. That was the take-away from a joint presentation made by Inspire and Strongbridge BioPharma at the Pharmaceutical Market Research Conference (PMRC) this month. Last fall, Strongbridge BioPharma engaged Inspire to find the “rarest of the rare”- people who have the exceptionally rare condition, primary periodic paralysis or PPP. There are between 4,000 and 5,000 diagnosed individuals in the US. Finding the Rarest of the Rare for Market Research: Patient Journey Mapping Through In-depth Interviews describes how [...]

What We Can Learn From Patients’ Stories

What We Can Learn From Patients' Stories What is disease?  As bioethicist, Jackie Leach Scully wrote, “Most of us feel we have an intuitive grasp of the idea, reaching mentally to images or memories of colds, cancer or tuberculosis. But a look through any medical dictionary soon shows that articulating a satisfactory definition of disease is surprisingly difficult.” 1 Every day, people come to Inspire’s social communities with the goal of sharing their experience with disease. We believe that those living with disease define it in their stories. Communities of patients with cancers, autoimmune, chronic and rare [...]