About Sara Ray

Sara Ray is a former director of research at Inspire.

Do Patients Care About What Your Drug Does?

Do Patients Care About What Your Drug Does? By Sara Ray, MA Be sure the trial outcomes echo the patient voice, article says In most randomized pharmaceutical clinical trials, researchers are looking for a statistically significant performance difference between the two courses of therapy. But which is more important to the patient: Statistically significant improvement of a variable, or clinically significant improvement? “The operation was a success, but the patient died” is a succinct example of a misplaced sense of priorities. The patient was probably hoping for a better result than academic satisfaction. Here’s another example. [...]

How Does Pharma Learn to Speak Patient? The “Patient Voice”

How Does Pharma Learn to Speak Patient? The "Patient Voice" By Sara Ray, MA We have all, at one time or another, been patients. True or false? If you answer true, it is likely that you are a person who has experienced only acute illnesses, meaning you get sick, feel lousy, get treated, you feel better. You return to your normal activities. You get back to life. Before getting to the language of patients or “patient voice,” it is useful to understand that “we are not all patients.” Carolyn Thomas, writer and patient advocate, explains that, [...]

5 Benefits of Patient Focused Drug Development Sponsors Need to Know

The Patient Is Speaking: 5 Benefits of Patient Focused Drug Development Sponsors and CROs Need to Know By Sara Ray, MA Since the 2012 FDASIA reauthorization of the Prescription Drug User Fee Act (PDUFA) and the 21st Century Cures Act ‐‐ Directing and Enabling Patient Focused Drug Development in 2016, integrating the patient perspective has been a priority. Our research team has conducted studies with patient and caregiver Inspire members for a variety of sponsors. I'd like to describe how these research projects produce important patient insights that inform and can improve clinical trials. Patient focused drug [...]

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 [...]

Warring Parties: Voices of Patients in Pain Vs. “Opioid Crisis”

Warring Parties: Voices of Patients in Pain Vs. “Opioid Crisis” By Sara Ray So many of us have pain management issues. We are fighting the doctors and the state laws and the insurance companies. The "opiod [sic] crisis" is an illegal drug problem; it is not a prescription problem for chronic pain patients. However, we are the ones who suffer. An increasing majority of doctors are scared to prescribe. I am scared every time I go for an appointment because I am afraid they will cut back my medication. ~Inspire member In July 2018, Kathleen Hoffman, Senior [...]

Targeting Your Audience: Where and How to Engage Millennials with Health Messages

Targeting Your Audience: Where and How to Engage Millennials with Health Messages By Sara Ray In Clinical Trials: 8 Reasons Researchers Should Pay Attention to Millennials, I identified unique cohort characteristics and experiences that have impacted millennials.1 Constant connectivity and technological sophistication inform and shape their lives and outlook. We explored where and how they spent their time online as healthcare consumers. To learn more, the research team at Inspire surveyed over 300 members between the ages of 18 and 36. (see note below) We focused on where and why they are active online, and their [...]

Video Vignettes: Through Their Own Eyes: Autoimmune Diseases

Video Vignettes: Through Their Own Eyes: Autoimmune Diseases The Autoimmune Diseases Support Community on Inspire created over 25,000 posts this past year. One of the over 21,000 members shared her experience with the community in a video. JTNDaWZyYW1lJTIwd2lkdGglM0QlMjI1NjAlMjIlMjBoZWlnaHQlM0QlMjIzMTUlMjIlMjBzcmMlM0QlMjJodHRwcyUzQSUyRiUyRnd3dy55b3V0dWJlLmNvbSUyRmVtYmVkJTJGUS1WSTcwQ1QzZlUlMjIlMjBmcmFtZWJvcmRlciUzRCUyMjAlMjIlMjBhbGxvdyUzRCUyMmF1dG9wbGF5JTNCJTIwZW5jcnlwdGVkLW1lZGlhJTIyJTIwYWxsb3dmdWxsc2NyZWVuJTNFJTNDJTJGaWZyYW1lJTNF According to the NIH, there are over 80 diseases caused by the immune system attacking the body.1 Some of the more common include type 1 diabetes, lupus, inflammatory bowel diseases, celiac disease, psoriasis, multiple sclerosis and rheumatoid arthritis. Symptoms that first appear - like fever, fatigue and muscle aches - describe a number of ailments. Getting a diagnosis can [...]

Clinical Trials: 8 Reasons Researchers Should Pay Attention to Millennials

Clinical Trials: 8 Reasons Researchers Should Pay Attention to Millennials More than 25% of the US adult population are Millennials. At 83.1 million, a bigger cohort than Baby Boomers,1 Millennials are gaining leadership in their employment, having children (30% are parents)2 and becoming extremely influential both culturally and financially. Events that have influenced this generation include the 9-11 terrorist attack, the Iraq and Afghanistan wars, the release of the iPhone in 2007, and the election of our first African American president.3 Another key experience has been the Great Recession. Many Millennials entered the job market during the great [...]