In This Week’s Issue:
- Despite Latest Report, ICER Still Limits Patient Input and Maintains Strong Ties To Insurers, click here to view the article.
- The Tennessean: Why Patients Need a Louder Voice in Medical Research, click here to view the article.
- Stat: How Can We Encourage Cancer Patients to Share Their Health Data?, click here to view the article.
- PCORI Blog: A Silver Medal for Patient of PCORI Awardee, click here to view the blog post.
1. Despite Latest Report, ICER Still Limits Patient Input and Maintains Strong Ties To Insurers
As detailed in an article in BIOtechNOW, “ICER doesn’t quite get why so many organizations, including patient groups, are uncomfortable with its operations and methodology – in particular, ICER’s strong ties to the insurance industry and the fact that its reports have been increasingly used to justify insurers’ choices of which drugs to cover or not cover. To be clear, and contrary to the suggestion by ICER that its critics do not support value-based pricing, value assessments of drugs are not a bad thing. BIO even issued a set of principles in support of value-based approaches—representing the first-ever systemic, industry-endorsed set of commitments to support comprehensive and sustainable solutions to improve patient access to and affordability of innovative medicines. What’s bad is when the methods behind those assessments do not adequately consider the viewpoints of patients and doctors, but nonetheless have the potential to influence patient access to needed care.” Click here to view the article.
2. The Tennessean: Why Patients Need a Louder Voice in Medical Research
An article in The Tennessean highlights that “PCORnet is trailblazing a new approach to clinical research — one that invites all the voices in every community to join the chorus. They do it by tapping into standardized, de-identified electronic health record (EHR) data and other information from patients. Patients and their advocates play essential leadership roles in PCORnet, helping to decide how to use the data and what to study. The result addresses the real-world, diverse needs of patients and those who care for them — in other words, research for the rest of us.” Click here to view the article.
3. Stat: How Can We Encourage Cancer Patients to Share Their Health Data?
In a report for STAT News, Maurie Markman comments, “The National Institutes of Health has announced plans to dole out $55 million in grants over five years to enlist 1 million volunteers to allow access to their clinical data from electronic health records, use mobile health devices and apps to track activity in real time, and submit their genetic and biological information through blood and urine tests...The NIH is billing its million-person effort as an opportunity for patient-volunteers to be partners in this research. Participants will have ongoing input into study design and implementation, says the NIH, as well as access to individual and aggregated study results.” Click here to view the article.
4. PCORI Blog: A Silver Medal for Patient of PCORI Awardee
“People with the gastrointestinal disorder Crohn's disease often worry about leading a normal life,” says a new post on The PCORI Blog. “Kathleen Baker has gone far beyond that, all the way to the Olympics, where she took a silver medal Monday in the 100-meter backstroke. As noted in a recent story in the New York Times, Baker, 19, has been treated for Crohn's disease for the past four years from Michael Kappelman, MD, MPH, a gastroenterologist at the University of North Carolina, Chapel Hill, and a double PCORI awardee.” Click here to view the blog post.
As detailed in an article in BIOtechNOW, “ICER doesn’t quite get why so many organizations, including patient groups, are uncomfortable with its operations and methodology – in particular, ICER’s strong ties to the insurance industry and the fact that its reports have been increasingly used to justify insurers’ choices of which drugs to cover or not cover. To be clear, and contrary to the suggestion by ICER that its critics do not support value-based pricing, value assessments of drugs are not a bad thing. BIO even issued a set of principles in support of value-based approaches—representing the first-ever systemic, industry-endorsed set of commitments to support comprehensive and sustainable solutions to improve patient access to and affordability of innovative medicines. What’s bad is when the methods behind those assessments do not adequately consider the viewpoints of patients and doctors, but nonetheless have the potential to influence patient access to needed care.” Click here to view the article.
2. The Tennessean: Why Patients Need a Louder Voice in Medical Research
An article in The Tennessean highlights that “PCORnet is trailblazing a new approach to clinical research — one that invites all the voices in every community to join the chorus. They do it by tapping into standardized, de-identified electronic health record (EHR) data and other information from patients. Patients and their advocates play essential leadership roles in PCORnet, helping to decide how to use the data and what to study. The result addresses the real-world, diverse needs of patients and those who care for them — in other words, research for the rest of us.” Click here to view the article.
3. Stat: How Can We Encourage Cancer Patients to Share Their Health Data?
In a report for STAT News, Maurie Markman comments, “The National Institutes of Health has announced plans to dole out $55 million in grants over five years to enlist 1 million volunteers to allow access to their clinical data from electronic health records, use mobile health devices and apps to track activity in real time, and submit their genetic and biological information through blood and urine tests...The NIH is billing its million-person effort as an opportunity for patient-volunteers to be partners in this research. Participants will have ongoing input into study design and implementation, says the NIH, as well as access to individual and aggregated study results.” Click here to view the article.
4. PCORI Blog: A Silver Medal for Patient of PCORI Awardee
“People with the gastrointestinal disorder Crohn's disease often worry about leading a normal life,” says a new post on The PCORI Blog. “Kathleen Baker has gone far beyond that, all the way to the Olympics, where she took a silver medal Monday in the 100-meter backstroke. As noted in a recent story in the New York Times, Baker, 19, has been treated for Crohn's disease for the past four years from Michael Kappelman, MD, MPH, a gastroenterologist at the University of North Carolina, Chapel Hill, and a double PCORI awardee.” Click here to view the blog post.