Redefining Life as a Patient and Caregiver : Experts by Experience 2018

Redefining Life as a Patient and Caregiver : Experts by Experience 2018 Parenting and caring for a child with a medical condition challenges Erin Moriarty Wade. She writes, “I know that the patient experience begins long before you meet the doctor. I know that sometimes even parking your car can become a big part of that experience–especially when you have to park at a distance with a cranky toddler in a stroller, and a child hobbling in pain. I understand the fear that patients may feel, and I appreciate the role of the oft-forgotten caregiver.” Early [...]

Collaborating with Rare Disease Patient Advocacy Organizations

Collaborating with Rare Disease Patient Advocacy Organizations By Judy Chandler MPH, CHES The first Rare Disease Day took place on February 29, 2008, chosen because February 29 is a “rare date.” Since then, it has continued to occur on the last day of February. Inspire will participate in this year’s worldwide awareness effort to help inform the general public and policy makers about the impact of rare diseases on patients’ lives at the annual Rare Disease Day at National Institutes of Health with a poster and exhibit booth on February 28. Defined as affecting less than 200,000 [...]

Diversity in Clinical Trials: Being Left Out

Diversity in Clinical Trials: Being Left Out By Marina Shayevich Why do African Americans develop breast cancers with significantly higher basal gene expression? 1 Why do Hispanics develop type II diabetes at an earlier age than other groups? 2 Understanding the functional reasons for disease processes is necessary to develop targeted treatments. Yet because clinical research lacks sufficient diversity, reasons for and mechanisms of disease development are not fully understood. Some reasons for minority patient under-representation in clinical trials are known. For example, strict eligibility criteria, like chronic kidney disease,3 hypertension or diabetes exclusions, leave out many groups, [...]

Patient Engagement through Internet Research and Clinical Trials: Annual Survey Results

Patient Engagement through Internet Research and Clinical Trials: Annual Survey Results By Hannah Eccard Inspire delves in to new developments and continuing trends among patients and caregiver members through its new publication, Insights from Engaged Patients. Details from this fourth annual survey of 9489 respondents are available to download below but here are a few highlights to get you started. Using ICD-9/10 to code members’ interests and health communities, we segmented respondents into health condition groups. The five largest condition groups in this survey were Oncology (i.e. all types of cancer and cancer-related issues), Autoimmune (Rheumatoid Arthritis, [...]

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 - [...]

Implementing patient centricity?

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 [...]

What Do Patients Wish Their Doctors Knew?

What Do Patients Wish Their Doctors Knew? For the better part of the 21st century, researchers from academia and the pharmaceutical industry have observed, recorded, and attempted to influence the physician-patient power dynamic.  As one such study revealed in 2001, both physicians and patients have “power”; but differences in “in-office priorities” – physicians’ focus on efficiency and patients’ on self-advocacy – result in missed opportunities for improved health outcomes. As my colleague, Richard Tsai wrote in Embracing The Patient-Centric Culture, “The challenge for healthcare organizations, be they government or private, is to elevate the perspectives of [...]

Find Your SMART: A blueprint for patient engagement

Find Your SMART: A blueprint for patient engagement The drug development process has historically siloed pharmaceutical companies and patients until the time comes for clinical trials. Drug development is a complex, expensive process that requires a lot of expertise. But patients are experts on their own experience of illness and their insights should be more integral to drug development. The pharmaceutical industry is already on the path towards integrating the patient experience early and often in the drug development process, partly because of the 21st Century Cures Act, which was made law in 2016 [my colleague Jeff [...]

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 [...]