Best Practices for Reaching, Educating and Engaging Diverse Communities in Clinical Trials through Strategic Partnerships There is a lot of buzz around patient engagement and what it means to have patients as partners. These conversations usually involve patients, the organizations that serve and represent them, and industry. Topics are focused on ways to ensure that […]
A patient with diabetes can expect many things, including the unexpected. But perhaps patients should begin to start expecting more from their providers, from the drug industry, from insurance companies, from the government, and from their own community.
Great ideas can go awry simply because preferences and input were not considered. It is true when planning a party and it is also true when designing a clinical trial or when reviewing drugs and devices. The patient community recognized that this critical ingredient was missing in the regulatory review process at FDA and worked with Congress to address it.
Not too long ago, it was cherry blossom season in Washington D.C., and I had several family members visit me. My family is still based in the Midwest, and so in some ways, we live in different worlds- size of living spaces, modes of transportation, etc. But we all have one thing in common: when we need something, we shop at Target.
Diabetes already makes me think about my food in a completely different way than the average person. I don’t see a grilled cheese, I see 30 grams of carbohydrates. I don’t see an apple, I see 15 grams of carbohydrates. I don’t see a Starbucks Frappuccino, I see a bazillion carbohydrates.
I don’t have diabetes. No one in my immediate family has diabetes. What could I possibly write that can reach the bar my colleagues and others in the diabetes community have set? I thought about asking one of my colleagues to take my slot and write another great blog that tied to their personal connection.
Living this long with diabetes, you develop a personal relationship with the technology you depend on to keep you alive. That is why I still have every insulin pump I’ve ever used. Each one tells a story of where I was in my life with diabetes and I won’t let myself throw them out.
This past weekend was Mothers day. A common topic in the online community that I love to read is children living with type 1 reaching an age where they look back and realize, with deep gratitude, all their parents and supports did. I love to work with parents of children with type 1 and explain that one day their children will understand and thank them in a fully overwhelming way.
I’ve been living with 1 diabetes for almost 18 years. All of those years had challenges and successes. As you all know, living with diabetes forces you to be independent way beyond your years. You can’t just go and eat, school is not just about classes it’s about balance, and you are always watching numbers. The NUMBERS. For you, for your parents, for your doctors. Always watching, and always knowing I CAN do this.
Glamour, glitz, great people watching and learning a little bit about all of the movies I wish I had seen over the past year. That’s what I look forward to on Oscar night. And Sunday night was no disappointment. But I was struck by something while listening to the acceptance speeches for Best Actress and Best Actor that should not be lost on us all. The Oscars shined a light on disease and the power of individual patient stories.