1. PIPC Patient Blog: Letitia Browne-James, click here to view the blog post.
2. Stakeholders Respond to 21st Century Cures Initiative: House E&C Committee Posts Comments, click here to view.
3. PCORI Database Update: New Research and Results Search Page, click here to view the updated page.
4. Wall Street Journal: Patient ‘Passports’ Make Sure People With Complex Cases Are Heard, click here to view the article.
5. PCORI Awards $64 Million for Five Pragmatic Studies, click here to view the press release.
6. PCORI Board Adopts Process for Peer Review and Public Release of Research Findings, click here to view the press release.
7. Brookings Plan to Monitor Medical Device Performance Includes PCORI Integration, click here to view the article.
8. Blog: The Right to Make Bad Choices, click here to view the blog post.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
In a new post on the PIPC Patients Blog, Ms. Letitia Browne-James discusses her challenges in identifying patient-centered care, and offers advice to other patients on how to be empowered. She writes: “At the age of 10, I was formally diagnosed with epilepsy, and I spent my life, through school and at work, suffering from seizures that continued to get worse. Years went by with multiple doctors and consults both nationally and internationally, leaving me frustrated and confused because the seizures were no longer appearing on scans and they continued to get more violent and frequent…”
“My experience with the medical care system and my efforts to be an empowered patient taught me a few things. Empowerment includes continuous collaboration and effort, not only from a medical team, but from us, the patients. If you are not happy with the care you are receiving or you feel like something is not right at any point in the process, it is important to empower yourself to research your treatment options, talk to other patients with the same condition to get ideas of what has worked for them as well as social support, and speak out when you questions about the care being provided to you. The truth is, each patient is different, and every medical team should work for the individual person – not for the diagnosis. Solutions that work for one subset of patients do not necessarily work for all patients; the best treatment for the average patient is not necessarily the best for you.”
“Shared decision-making in the medical process cannot be ignored as the healthcare industry is making decisions on what treatments we should be able to access. Patients have to understand their options and make an active choice in their care to get the most out of their treatment. Patient preferences should matter to our healthcare team. And if it doesn’t, we should be empowered to find a different health care provider. As I’ve often said when speaking about patient empowerment: your doctor may be the expert in medicine, but only you are the expert on you.” Click here to view the blog post.
2. Stakeholders Respond to 21st Century Cures Initiative: House E&C Posts Comments
The House Energy and Commerce Committee website has posted several of the comments provided in response to the proposal from many of its members for the 21st Century Cures Initiative. Click here to view the comments that are currently posted.
3. PCORI Database Update: New Research and Results Search Page
Upon recent input from PIPC, the Patient Centered Outcomes Research Institute (PCORI) has begun to roll out new web functionality to allow users to search for all the research on a particular condition or conditions. According to recent correspondence from PCORI, “Our Research and Results page now allows users to filter our funded projects by primary condition/disease and to feature that same information in our individual project summaries. Each funded project is tied to a single, mutually exclusive category that lets us report on the total award amount for each condition/disease without double counting, and lets users who download the awards in spreadsheet format work with the same numbers we use to communicate the contents of our funded portfolio. We are continuing to work to improve the functionality of our Research and Results pages by providing additional data on individual award pages, including priority populations, care continuum, and other points of interest for the users of our site. As always, your input and interest is greatly appreciated.” Click here to search the new PCORI research and results page.
4. Wall Street Journal: Patient ‘Passports’ Make Sure People With Complex Cases Are Heard
According to an article in the Wall Street Journal, “Many patients are afraid to ask doctors questions for fear of appearing to challenge them, studies have found, and doctors often don’t take the time to listen to their input. Yet when patients and families are fully involved in medical decisions and able to express themselves, studies show it can result in better patient outcomes, lower risk of medical errors and fewer readmissions after discharge. In addition, patients incur lower costs and rate their satisfaction more highly. Over the past few years, Medicare has been basing some hospital payments on patient satisfaction surveys. The aim of a patient passport ‘is to even the playing field and improve the quality of conversations that lead to deeper and more trusting relationships between providers and patients,’ says Susan Frampton, president of Planetree, a nonprofit hospital membership group that promotes patient-centered care.’” Click here to view the article.
5. PCORI Awards $64 Million for Five Pragmatic Studies
According to a recent press release last week, “the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors [on Tuesday] approved awards totaling more than $64 million to fund five large patient-centered comparative effectiveness research (CER) studies that will answer critical clinical questions about care for cancer, back pain, and stroke. The awards are the first to be made through PCORI’s Pragmatic Clinical Studies Initiative, an effort to produce results that are broadly applicable to a greater variety of patients and care situations and can be more quickly taken up in routine clinical practice.” Click here to view the press release.
As PCORI Executive Director Joe V. Selby, MD, MPH, explains on The PCORI Blog, “Does breast cancer screening based on a woman's individual risk for breast cancer detect cancer as effectively as annual screening for all? Does prompt referral to physical therapy keep back pain from becoming a chronic condition? Is it better for stroke patients to go home from the hospital sooner, with special planning, and recover there? We look forward to seeing those and other critical research questions answered within the next few years through projects just approved by PCORI's Board of Governors in the first round of our Pragmatic Clinical Studies Initiative.” Click here to view the blog post.
Moreover, the Chicago Tribune reports, “The announcement brings the total amount awarded to $738.4 million to more than 400 projects and programs across the country. Tuesday's awards ranged from $7.8 million to $14.5 million....‘We're very cognizant of the importance of implementation of important findings,’ the research institute's Chief Science Officer Bryan Luce said during the Tuesday board of governors meeting in Washington, D.C. ‘That's the reason for this extensive engagement that you saw for each one of these projects.’” Click here to view the article.
6. PCORI Board Adopts Process for Peer Review and Public Release of Research Findings
As outlined in a recent press release, “The PCORI Board of Governors today adopted PCORI’s process for peer review and public release of the results of the comparative clinical effectiveness research (CER) studies it funds. This process details how PCORI will meet its legislative mandate to ensure the scientific integrity of the primary research it supports and make study findings widely available and useful to patients, clinicians, and the general public within a specific timeframe. It is part of PCORI’s broader efforts to disseminate and implement research findings. The process document adopted by the Board reflects revisions made in response to comments provided by more than 60 individuals and organizations during a 54-day public comment period that followed PCORI’s release of a draft process document last September.” Click here to view the press release.
PCORI’s Chief Engagement Officer Orlando Gonzales, MPA and Executive Director Joe V. Selby, MD, MPH, commented on The PCORI Blog, “We were pleased by the response that we received from our wide range of stakeholders. In addition to input provided at a public forum and webinar we hosted, our website received 63 submissions, with a total of 832 comments. Of those submissions, the greatest proportion came from researchers, followed by organizations representing patients and caregivers, and next, clinicians and clinician societies. The commenters generally agreed with our proposed plan.” Click hereto view the blog post.
7. Brookings Plan to Monitor Medical Device Performance Includes PCORI Integration
As Suzanne Hodsden reported last week in Med Device Online, “the Brookings Institution's Engleberg Center for Health (ECH) issued a new report, Strengthening Patient Care: Building an Effective National Medical Device Surveillance System, outlining a system to track the performance of medical devices, to the benefit all stakeholders in the healthcare system... According to the report, the new system would not compete with or replace efforts by Congress to include medical devices in the Sentinel Initiative, and it would coordinate with the Patient-Centered Outcomes Research Institute (PCORI) in its efforts to design a national research database.” Click here to view the article.
8. Blog: The Right to Make Bad Choices
Health policy blogger Kim Bellard comments in a new blog post that “we talk a lot about making our health care system ‘patient-centered’ and ‘empowering patients,’ but sometimes it seems that means only when they make choices we like… We all see people every day who make what we think are bad choices, and we may wish we had the power to decide for them. But, fortunately, we don't live in a society where we can usually do that. Reason with them, cajole them, make sure they are fully informed about the consequences of their choices -- sure, we should do all those [things]. But the bottom line for me is that giving people choice means sometimes they will make bad choices, or at least choices with which we don't agree.” Click here to view the blog post
9. Medical Journal Articles
Health Technology Assessment: At the Junction of Evidence, Policy, and Reimbursement: Click here to view.
Oral Anticoagulants, Health Technology Assessment and Health Policy: Click here to view.
Comparative Effectiveness of High-Dose Versus Standard-Dose Influenza Vaccines in US Residents Aged 65 Years and Older from 2012 to 2013 Using Medicare Data: A Retrospective Cohort Analysis: Click here to view.
Evidence-Based Decision-Making 1: Critical Appraisal: Click here to view.
Evidence-Based Decision-Making 3: Health Technology Assessment: Click here to view.
Should Evidence-Based Medicine Be Used to Design Clinical Practice Guidelines for the Prevention of Perinatal Transmission of HBV From HBeAg-Positive Mothers? Click here to view.
10. AHRQ Effective Program Updates
Horizon Scan Status Update: January 2015 Report: Click here to view the report.