Getting direct input from patients in order to provide optimal care, address unmet needs and recognize potential challenges is important, and it’s being implemented in different, more focused ways now.
Devising credible, diverse patient advisory boards and committees is continuing to become a great way for organizations and companies to provide not only information to additionally help patients with engagement, but also benefit pharmaceutical companies, regulators and providers.
The FDA recently announced the development of its Patient Engagement Advisory Committee. And now PatientsLikeMe has named its second cohort of members for its patient-only Team of Advisors for 2015–2016 .
PatientsLikeMe has more than 350,000 patients who network with others who have the same disease or condition. Through this, data is continuously generated that can help researchers and others involved in development of new products, services and care. With the new concentrated team of selected advisors, some of the big picture approaches as well has narrow issues can be tackled more effectively.
“These folks have been selected through a rather rigorous process to ensure that they meet the requirements we have,” CEO Martin Coulter said in an interview. “We want to cover a diversity of conditions, patients that have experience in the circle of care that they come in with a unique perspective – a very rich point of view to where they’ve seen personal success and personal challenges in the healthcare system. On top of that, all 14 of these people are hugely motivated and incredibly enthusiastic about working with us in partnership to make sure our goals of putting patients at the center of care represent a patients’ voice and can help with decision making across the board.”
The main purpose of a board like this is that there is an underlying commitment on the part of the members to be available during the times when specific information and feedback is needed in a timely manner for certain projects, Coulter said. And as he pointed out, this feedback from consumers is important for anyone who is writing a check in healthcare, exemplified by PatientsLikeMe’s partnership with Walgreens, for example.
For many drug makers, getting honest input from patients on their own can be difficult because of regulations, so various initiatives like these have a valuable impact in the industry.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
So what’s it like to be a member on a committee like this – why is it important to them individually? Christel Aprigliano, CEO of nonprofit The Diabetes Collective, has been chosen to be part of the PatientsLikeMe group, and she has been living with Type 1 diabetes for more than 30 years. Beyond the information she gets from monitors and other devices she uses daily, she says qualitative data is just as valuable as the quantitative data.
“My lab results might look like I’m doing great, but if I’m not feeling good, that information is qualitative,” Aprigliano said. “Having the opportunity to be on the Team of Advisors for PatientsLikeMe solidifies my value structure. I’m a firm believer in having a holistic picture of what it means to be a patient.”
As a central focus with The Diabetes Collective as well as work now with PatientsLikeMe, Aprigliano points out that peer support is also a key factor for patients.
There’s a clear recognition in healthcare now that the “professionals” aren’t the only ones who can provide helpful, productive input. In fact, if anyone is going to be a professional about an individual condition it can often be those especially engaged people who can cross-reference the actual data and feedback with the actual experience.
Photo: PatientsLikeMe
