1. PIPC: View the Patient Empowerment Webinar! Click here.
2. Inside Health Policy: Stakeholders Expect Obama's Precision Medicine Effort To Complement Cures Initiative, click here to view the full article (subscription required).
3. NYT: Obama to Request Research Funding for Treatments Tailored to Patients’ DNA, click here to view.
4. The Hill: America's Healthcare Costs Could Hinge on Congressional Strategy Sessions, click here to view the full article.
5. The Hill: PCORI’s promise to patients, click here to view the article.
6. US News: How Sharing Your Health Data Can Help Others, click here to view the full article.
7. Families USA: PCORI-Funded Research Addresses Racial and Ethnic Disparities in Obesity, click here to view the full blog. 8. Video: Amy Berman, RN, Discusses the Importance of Patient-Centered Care in Oncology, click here to view the video.
9. WaPo: Informed Consent: U.S. Considers New Rules for Taking Part in Medical Research, click here to view the full article.
10. PCORI Updates: PCORNET and Pragmatic Trials, click here and here and here for more details.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.
On Tuesday, January 20, the Partnership to Improve Patient Care held a webinar to discuss the importance of patient empowerment. As lawmakers in Washington seek to build a “patient-centered healthcare system,” real patients and health policy experts discussed what decisions are being made by policymakers, and how they could impact patients like you. Click here to view.
The participants in our webinar offered their expert perspectives on the work being done to not only better engage patients in their health care, but to empower and activate them. Among the highlights of the webinar:
Two individual patients discussed their personal encounters with the healthcare system, and provided advice for other patients on how to be a successful self-advocate: Ms. Laura Roix, an idiopathic pulmonary fibrosis (IPF) patient, and Ms. Letitia Brown-James, an epilepsy patient.
PIPC’s Executive Director, Sara van Geertruyden, discussed the components of a patient-centered health system, and the importance of empowered patients to drive policies that are responsive to their unique and individual health care needs
PIPC Chairman Tony Coelho moderated the discussion, providing his perspectives based on decades of experience as an epilepsy patient, a Congressman, and a life-long patient-advocate.
2. Inside Health Policy: Stakeholders Expect Obama's Precision Medicine Effort To Complement Cures Initiative
Last week, in Inside Health Policy, “President Barack Obama's newly announced Precision Medicine Initiative would double funding for antibiotic development while continuing investment in Alzheimer's and brain research, and while the details remain scant the personalized medicine initiative is viewed by key stakeholders as complementary to the House Energy and Commerce panel's emerging 21st Century Cures Initiative. One stakeholder says the initiative may have roots in a bipartisan bill that Obama sponsored while senator. Click here to view the full article (subscription required).
3. NYT: Obama to Request Research Funding for Treatments Tailored to Patients’ DNA
According to the New York Times, "President Obama will seek hundreds of millions of dollars for a new initiative to develop medical treatments tailored to genetic and other characteristics of individual patients, administration officials say...The money would support biomedical research at the National Institutes of Health and the regulation of diagnostic tests by the Food and Drug Administration, officials at the two agencies said.” Click here to view the article.
4. The Hill: America's Healthcare Costs Could Hinge on Congressional Strategy Sessions
John Rother, writing in the The Hill’s Congress Blog, commented, “[C]onsumers deserve access to reliable provider quality information and an estimate of their costs before receiving care (excepting emergencies). And when they use such information to seek out more effective, less-costly care, they should get a break on their out-of-pocket costs. Policymakers could go a long way toward making this happen by enabling private-sector transparency tools to draw on Medicare's vast trove of cost and quality data and by allowing Medicare Advantage plans to pilot-test value-based insurance designs.” Click here to view the full article.
5. The Hill: PCORI’s promise to patients
Also from The Hill, Grayson Norquist wrote, “PCORI's approach differs from traditional research because it does not stop at what works best for the ‘average’ patient. We ask whether treatment effectiveness varies depending on patient characteristics and preferences. It's a model that can advance personalized medicine by giving patients and those who care for them more personalized information about their options.” Click here to view the article.
6. US News: How Sharing Your Health Data Can Help Others
Last week, in US News, Kristine Crane reported, “’This can be especially important because it provides a safe space for patients – who normally go by aliases – to communicate with each other, especially since communicating with others might be limited, says Francisco Grajales, a doctoral candidate in big data at the University of British Columbia. "It can be very difficult for patients to come out to family about what they are going through,’ Grajales says.
“PatientsLikeMe, an organization started in 2004 by three engineers, provides a platform for patients with various conditions to engage with each other about their medical conditions. On Dec. 2, it launched “24 Days of Giving,” a campaign focused on encouraging people – both healthy and sick – to share their data. On the group’s website, people can enter their health data, and those suffering from particular conditions can find others with the same conditions.” The article described the experience of Letitia Browne-James, a recent participant in PIPC’s Patient Empowerment Webinar, for whom "finding PatientsLikeMe was also a lifesaver.” The article states, "On August 16, 2012, Browne-James underwent the surgery, and she’s been seizure-free ever since. She continues receiving a lot of questions from others on PatientsLikeMe about the surgery and sharing her health data on the website." Click here to view the full article.
7. Families USA: PCORI-Funded Research Addresses Racial and Ethnic Disparities in Obesity
Cathy Gurgol and Katie Lewis of Families USA blogged, “Through its investments and resources, PCORI will help to answer important questions patients have about which care options will best help them obtain a healthy weight and improve their quality of life. We are already beginning to determine how best to disseminate such information to patients and others in the healthcare community. We are keeping a close eye on the obesity studies as they progress and look forward to reporting findings to you as they become available.” Click here to view the full blog.
8. Video: Amy Berman, RN, Discusses the Importance of Patient-Centered Care in Oncology
The American Journal of Managed Care last week said, “For people who have cancer, patient-centered care is particularly important because their life is changing, Amy Berman, RN, BS, senior program officer at the John A. Hartford Foundation, who also has stage 4 breast cancer, said...‘Cancer is one of those all-encompassing diseases that affects not just the person but their family, and providers need to understand, you know, what's the best way to help that person do as well as possible,’ she said.” Click here to view the video.
9. WaPo: Informed Consent: U.S. Considers New Rules for Taking Part in Medical Research
Last week, author Shefali Luthra reported in The Washington Post, “[S]ome institutions and advocacy organizations, including the Association of American Medical Colleges, are warning that proposed federal guidelines could have a chilling effect on innovation while fundamentally altering which studies get done. The six-page guidance— which could be finalized this year — calls for greater transparency in studies that compare how effective different treatments are. These studies, known as comparative effectiveness research, are among the tools being tapped by the Affordable Care Act to help curb health-care spending.” Click here to view the full article.
10. PCORI Updates: PCORnet and Pragmatic Studies
Applications For PCORNET Aspirin Trial Due Jan. 30
Research teams affiliated with the individual networks that comprise PCORnet have until 5 p.m. ET Friday, Jan. 30, to submit their applications for the first clinical trial to be conducted through this national patient-centered clinical research initiative. [PCORI is] offering up to $10 million to fund this demonstration study focused on determining whether low- or high-dose aspirin is better for patients with coronary artery disease. Click here for more details.
Board To Vote On PCORNET Research Topic, New Advisory Panel
During its meeting on Tuesday, Jan. 27, the PCORI Board of Governors will consider for approval the charter for a new Advisory Panel on Communication and Dissemination Research. The Board also will vote on a second proposed PCORnet demonstration study, which would focus on obesity. Click here to view the agenda and register for the webinar.
Applications For Latest Large Pragmatic Studies Funding Opportunity Due Feb. 3
Research teams invited to submit applications for the Winter 2015 cycle of the PICOR initiative to fund large pragmatic studies to evaluate patient-centered outcomes have until 5 p.m. ET Tuesday, Feb. 3, to submit their proposals. Click here to view the funding announcement.
11. Medical Journal Articles
The Controversy Over SUPPORT Continues and the Hyperbole Increases: Click here to view.
The Louisiana Clinical Data Research Network: Leveraging Regional and National Resources to Improve Clinical Research Efficiency: Click here to view. Optimizing the Leveraging of Real-World Data to Improve the Development and Use of Medicines: Click here to view.
12. AHRQ Effective Program Updates
Scientific Information Request on Treatments for Fecal Incontinence: Click here to comment by Feb 20. Scientific Information Request on Imaging for Pretreatment Staging of Small Cell Lung Cancer: Click here to comment by Feb 20.
Renal Artery Stenosis Update: Click here to view the research protocol.