Motivating change through online patient sharing

Motivating change through online patient sharing By Kathleen Hoffman, PhD MSPH Humans evolved as storytellers. Experiences of the weather, nature, life, and the world have been explained through legends and myths. Sharing stories continues to build and maintain community. As Marie Ennis O’Connor, Irish breast cancer survivor, blogger and marketing consultant states, patients’ stories are authentic and genuine “windows into the lived experience,”1 or as linguists would argue, their stories are rich sources of “real world evidence.” Breast cancer patients have been sharing their stories online for many years now. On July 4, 2011, the #BCSM (for [...]

Social Listening to Understand the Unmet Needs of Patients

Social Listening to Understand the Unmet Needs of Patients By Marina Shayevich and Sara Ray Across healthcare, patients lament the imperfection of pharmaceutical treatment. Although grateful to have life saving and life improving medications, patients are often met with frustration at the limitations of their medications. Nowhere is that more evident than in rare diseases, where the rarity of the illness may lead to a scarcity of available, approved pharmaceutical treatment options. Many patients are left to turn to off-label medication use in the effort to get the best solution possible. Even then, these treatments do not [...]

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. [...]

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 [...]