Increasing Minority Participation in Cancer Clinical Trials 1

2011 Diversity Conference by Oregon Department of Transportation is licensed under CC by 2.0

2011 Diversity Conference by Oregon Department of Transportation is licensed under CC by 2.0

Failing to recruit a diverse population of patients for clinical trials can have a negative impact on drug research. Last year, Lilly CEO John Lechleiter pointed out in a Forbes editorial that “when clinical trials are skewed toward Caucasians, researchers can miss key interactions between the drug and genes.” It’s unfortunate to think that we may be missing opportunities to create more effective treatments due to these gaps in knowledge and understanding.

National Minority Health Month and National Minority Cancer Awareness Week, observed each year in April, were created to address the issues preventing minorities from having full access to healthcare options. Among the many health-related disparities that minorities face are fewer opportunities to learn about and enroll in clinical research studies. This disparity is most pronounced in the area of cancer.

More…

ePatients Tweet Their #ChronicLife 1

Chronic Life Word Cloud

In the early 90s, Britt Johnson‘s life was like that of any healthy young girl. Until suddenly, it wasn’t. In the summer of 1992, Britt came down with strep throat for the first of what would be many times. Over the next several months, Britt encountered one health setback after another. Months of health setbacks turned into years, during which time Britt had repeated contact with the healthcare system. This contact was not always positive. Britt received a series of misdiagnoses and was even accused of being a hypochondriac. Finally, at the age of 20 Britt was diagnosed with Psoriatic Arthritis. Britt’s disease has continued to progress, and her diagnosis has been amended to Spondyloarthropathy and Rheumatoid Arthritis.

More…

Clinical Research Site Professionals Focus on Improving Lives 1

Clinical Research Site Professionalsv3

Clinical research site professionals (investigators, site directors, study coordinators, and pharmacists) play a very important role in shaping a clinical trial volunteer’s experience. That role can be a complex one, as they work to build bridges between the sponsor’s goals for a trial, the physician’s care plan for the volunteer, and the volunteer’s own needs and wishes. They are often “the face” of the trial, and provide the much-needed personal connection for patients as they navigate the process of participating in a trial.

We know there’s a lot we can learn from their experiences and insights. We recently created a Lilly Innovation Site Advocacy Group to help keep the lines of communication open and encourage innovative thinking around improving the clinical trial experience. Our hope is that we can make site professionals jobs a little easier, and offer exceptional trial experiences for patients.

More…

Learning From Those Touched By Rare Disease 1

Rare Disease Day

Our most rare or unique qualities can often be our greatest strengths, but when it comes to disease, rarity is a tremendous challenge. A rare disease, also known as an orphan disease, is any disease that affects a small percentage of people. In the United States, a disease is considered rare if it affects fewer than 200,000 people at any given time. According to the National Institutes of Health (NIH), there are more than 6,800 rare diseases. Though each of these diseases are rare, having a rare disease of some sort is not. Approximately 30 million Americans, or almost one in every 10 people, suffer from a rare disease.

Living With a Rare Disease

The numbers cited above are interesting, but they don’t tell the whole story. The rest of the story relates to the daily struggles of rare disease patients and their support networks. Rare disease symptoms vary even among patients suffering from the same disease. This symptom variability, combined with lack of scientific understanding and awareness, can lead to delayed diagnosis and difficulty accessing treatment. Patient quality of life is severely affected by the “loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.”

More…