1. LAN: Last Day to Comment on Patient Attribution and Financial Benchmarking White Paper, see details below.
2. Health Affairs Blog: Patients Must Be Part Of Defining Quality And Increasing Value, click here to view the blog post.
3. Kaiser Health News: Medical Advocates Can Help Guide Patients On Difficult Care Choices, click here to view the article.
4. Video: ‘PIPC Patient’ Letitia Brown-James Pays it Forward, click here to view her video.
5. Bioprocess Online: Bringing Patient Centricity To Biologics Drug Development, click here to view the article.
6. Bloomberg BNA: PCORI Network to Enable EHR Data Sharing for Research, click here to view (subscription only).
7. Value-Based Health Care: A New Flight Pattern, click here to view the article.
8. PCORI Blogs: New Methodology Standards; How PCOR Helps Families With Rare Diseases, click here and here to view the posts.
According to a release from the LAN, the public comment period for two draft white papers released by the PBP Work Group closes today – Monday, March 7. “This is a friendly reminder to please submit your input on the patient attribution and financial benchmarking white papers, as well as any of the diagrams, flowcharts, and tables used to illustrate key concepts. To provide feedback please use Handshake, the online patient attribution or financial benchmarking comment forms, or email at PaymentNetwork@MITRE.org.”
2. Health Affairs Blog: Patients Must Be Part Of Defining Quality And Increasing Value
As the Robert Wood Johnson Foundation’s (RWJF) Anne Weiss highlights on the Health Affairs Blog, RWJF “is providing PatientsLikeMe—an online patient network—with a $900,000 grant so as to extend a research platform to create or enhance performance measures that give patients a voice and put them at the center of the clinical research process. The grant will allow researchers to pilot, share, and validate new ways to measure patient-reported outcomes and use the PatientsLikeMe network, which includes longitudinal profiles for more than 400,000 patients. PatientsLikeMe will partner with the National Quality Forum to develop, test, and facilitate broader use of patient-reported outcome measures and ensure that they can be used alongside clinician-reported measures to assess clinical performance.” Click here to view the blog post.
3. Kaiser Health News: Medical Advocates Can Help Guide Patients On Difficult Care Choices
As Kaiser Health News reported last week, “Stan and XuXia Smith learned from an ultrasound midway through the pregnancy that their son would be born with an often-fatal congenital heart defect. In the first week of the baby’s life, they got more bad news: Some major organs were incorrectly formed and mislocated inside Travis’s tiny body. They faced a long journey… The Chicago couple hired Dan Polk, a patient advocate and retired neonatologist whose specialty is working with sick babies and their families. Polk helped the Smiths understand the complexity of their son’s condition while building an experienced health care delivery team, and he has guided them through the intricacies of Travis’s treatment.” Click here to view the article.
4. Video: ‘PIPC Patient’ Letitia Brown-James Pays it Forward
After finding a way to stop her epileptic seizures, Letitia Brown-James—who has been featured on the PIPC Patients’ Blog—helped a teenager find a solution too. Click here to view her video.
5. Bioprocess Online: Bringing Patient Centricity To Biologics Drug Development
As Anna Rose Welch wrote last week, “When we think of patient centricity, it’s likely we immediately think of pharma’s efforts in the clinical space. Over the past few years, pharma companies have been increasingly implementing strategies to integrate patients’ voices into the development of trial protocols. These efforts aim to emphasize the importance of the patient and their medical needs in the development of a life-saving drug. But rarely does the notion of patient centricity extend into the drug manufacturing space. When it comes to making a drug, patients often lack the understanding of how the drug that saves their lives came to be… ‘Getting involved in drug development is valuable for everyone, especially in a day and age where patients are striving to have more control over their treatment options,’ says Muldavin. ‘There are a lot of lessons in our project as to the power of patients working together. We’re showcasing patient-centered medicine.’” Click here to view the article.
6. Bloomberg BNA: PCORI Network to Enable EHR Data Sharing for Research
As Bloomberg BNA reports, “The Patient-Centered Outcomes Research Institute is building a national network to make it easier for patients to share their electronic health data for research. The program builds on other data sharing efforts as part of President Barack Obama's Precision Medicine Initiative to advance an emerging model of health-care delivery that targets treatments to patient subgroups identified by their genetic makeup. Data sharing is a key tenet of the initiative...‘Information that reflects the everyday, lived experiences of ordinary patients is vital for health research to ensure that it focuses on the questions that matter most to patients and the results are directly applicable and useful to a wide range of patients,’ [PCORI Executive Director Joe Selby] said in a statement.” Click here to view (subscription only).
7. Value-Based Health Care: A New Flight Pattern
An article published in the St. Louis Post-Dispatch notes that “currently, the ‘evidence-based’ model that we use today embraces the practice of medicine based upon treating symptoms where there is clear evidence that the treatment will show benefits to the patient. Of course that sounds good, but evidence-based medicine generally focuses on just one outcome and often ignores the quality of life parameters associated with the entire care cycle, which includes the treatment, the recovery and the rehabilitation, that often extend up to one year after the hospital discharge.” Click here to view the article.
8. PCORI Blogs: New Methodology Standards; How PCOR Helps Families With Rare Diseases
PCORI’s David Hickam, MD, MPH and Joe V. Selby, MD, MPH commented last week on The PCORI Blog, “The PCORI Methodology Committee developed the initial set of standards, meeting one of the requirements of our authorizing law...Over the past year, the committee worked on improvements to the original standards. On December 7, 2015, our Board of Governors reviewed a proposed update that included eight new standards, as well as changes to existing standards that reflect advances in methodology, clarify content, or make the standards better align with one another and other PCORI guidance. The Board approved posting of the draft standards for public comment. Comments are welcome through late March.” Click here to view the post.
In another post on The PCORI Blog, advisory panel members Vincent Del Gaizo and Patricia Furlong comments, “Through an award from PCORnet (PCORI's National Patient-Centered Clinical Research Network) to our network of patients and clinicians, called PARTNERS, pediatric rheumatology has been able to create infrastructure around patient-centered research. But there are a lot of patient groups that are isolated. Further collaboration would be a terrific byproduct of PCORI work, and not just for researchers but for patients as well. Research empowers patients to get involved and engaged.” Click here to view the post.