Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice By Kathleen Hoffman, PhD, MSPH The most persistent hurdle in running a clinical trial is recruiting and keeping participants. More recently, the FDA added the expectation that the value of released drugs be supported with Real World Evidence (RWE). A recently-conducted multi-center prospective observational study accomplished both by using patients as partners throughout clinical design. The PROP-UP study was a designed to collect real world patient centered data on the harms and benefits of the new, highly effective, direct-acting antiviral [...]

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May 2020By |0 Comments

Real World Voice Allows Patients to be Part of the Cure

Real World Voice Allows Patients to be Part of the Cure By Claire Harter “The patient wants to be a partner in cure, just as with their doctors they want to be a partner in care.” - John Linnell, COPD Patient Advocate, talking about health literacy, eyeforpharma virtual conference, 4/14/2020 Where and how can patients partner with pharma for a cure? Where can pharma go to learn from patients about the patient experience? One resource is Electronic health records (EHRs). As a resource, they provide critical information about patient diagnosis and treatment. But, EHRs reflect the [...]

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Apr 2020By |0 Comments

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. [...]

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Oct 2018By |0 Comments

Patient-Centricity, Health Literacy and Pharma

Patient-Centricity, Health Literacy and Pharma According to an IBM white paper, “Patient-centric models put the needs of the patient first, but require greater patient responsibility and accountability.”1 This is a challenge.  Making the best possible decisions about one’s health requires a set of skills and resources that about 90 million people - nearly half the US adult population - lack.2 What is health literacy? Health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions,”3  which is a simple way to [...]

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May 2017By |0 Comments