In This Week’s Issue:
1. How Healthcare Orgs Can Drive Family Engagement in Patient Care, click here to view the article.
2. The Hill: We Can Improve and Modernize the Drug Development Process in the United States, click here to view the article.
3. PCORI Blogs: Multiple Sclerosis Treatments; Assessing Research Quality; Kidney Failure, see details below.
4. ICER Updates: Multiple Sclerosis Drugs; Ovarian Cancer; Gene Therapy, see details below.
5. Video: Dr Roy Beveridge Discusses Humana's Efforts to Include Perspective of Patient and Provider, click here to view the video.
6. Congressional Briefing: State of Lung Cancer (3/16), click here for additional details.
7. Archived PIPC Webcast: PCORI Advocacy 101, click here for details.
8. Upcoming Events and Webinars, see details below
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. How Healthcare Orgs Can Drive Family Engagement in Patient Care, click here to view the article.
2. The Hill: We Can Improve and Modernize the Drug Development Process in the United States, click here to view the article.
3. PCORI Blogs: Multiple Sclerosis Treatments; Assessing Research Quality; Kidney Failure, see details below.
4. ICER Updates: Multiple Sclerosis Drugs; Ovarian Cancer; Gene Therapy, see details below.
5. Video: Dr Roy Beveridge Discusses Humana's Efforts to Include Perspective of Patient and Provider, click here to view the video.
6. Congressional Briefing: State of Lung Cancer (3/16), click here for additional details.
7. Archived PIPC Webcast: PCORI Advocacy 101, click here for details.
8. Upcoming Events and Webinars, see details below
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. How Healthcare Orgs Can Drive Family Engagement in Patient Care
As reported last week in Patient Engagement HIT, “Family engagement is key for providing emotional and logistical support during patient-centered care... ‘A lot of patients and families are kept on the periphery on research in patient-centered care,’ [Jill Harrison, PhD] maintained. At Planetree, Harrison and her team are trying to improve this issue, working with the Patient-Centered Outcomes Research Institute (PCORI) to determine how research can better support patients and their family members.” Click here to view the article.
2. The Hill: We Can Improve and Modernize the Drug Development Process in the United States
In a new article published in The Hill, Dr. Andrew von Eschenbach and Janet Marchibroda comment, “Modernizing the science of evidence generation through the use of biomarkers, real-world evidence — or data reflecting the actual experience of patients, adaptive trial designs, and more robust post-market surveillance processes, will have a significant impact on the time and cost of development... Industry is supportive of user fees and patient advocates, scientists, and academia are contributing their expertise and advice. Now we no longer need to debate, but rather get the job done. Millions of lives are depending on it.” Click here to view the article.
3. PCORI Blogs: Multiple Sclerosis Treatments; Assessing Research Quality; Kidney Failure
During Multiple Sclerosis Awareness Week, a new PCORI blog post looks at an unusual study: one that examines whether older patients with MS can stop taking the very drugs that have helped them manage their neurological disorder. Patients frequently ask John Corboy, the study’s principal investigator, “Hey doc, how long do I need to take this?” Studies have shown that the medicines generally become less effective as patients age. With PCORI funding, Corboy’s team is randomly assigning 150 older patients whose disease has been stable for five years to stop using their medicines, while another 150 patients continue treatment. Click here to view the blog post.
In another post on The PCORI Blog, Joanna Siegel, SM, ScD and Christopher Gayer, PhD comment, “We are charged with assessing the scientific integrity of our primary research, and then making the findings quickly available in a meaningful and user-friendly format for all to see—patients, clinicians, and the general public, as well as scientists. To do this, we have developed and implemented new processes, not usually required of research funders, for evaluating the results of the studies we fund and translating them into short, easy-to-understand summaries to be posted on our website. To spread the word further, we have implemented a policy to support free public access to scientific journal articles reporting the final results of our studies.” Click here to view the blog post.
Finally, in a third post on The PCORI Blog, Jamie Green, MD, MS and Brian L. Bankes comment, “Patients often get diagnosed in an emergency department, and they must choose a treatment approach under highly stressful circumstances. One thing they don't typically receive is support to make an informed decision. In a PCORI-funded study, researchers at Duke University in North Carolina and Geisinger Health System in Pennsylvania are working to change that. They are testing a program that adds a kidney transition specialist to the healthcare team.” Click here to view the blog post.
4. ICER Updates: Multiple Sclerosis Drugs; Ovarian Cancer; Gene Therapy
As detailed in a press release, “The Institute for Clinical and Economic Review (ICER) has released a Final Evidence Report and Meeting Summary on the comparative clinical effectiveness and value of disease-modifying therapies (DMTs) for treatment of relapsing-remitting and primary progressive multiple sclerosis (RRMS and PPMS).” Click here to view the press release.
ICER has also posted a Draft Scoping Document that will shape an upcoming report on poly (ADP-ribose) polymerase (PARP) inhibitors for treatment of ovarian cancer. ICER's report is expected to review the evidence on rucaparib (Rubraca™, Clovis Oncology), niraparib (Tesaro, Inc.), and olaparib (Lynparza™, AstraZeneca).” Click here to view the document.
Finally, ICER has released a new white paper on gene therapy, which was developed following a December 2016 meeting of ICER’s membership program, during which leaders from 20 payer and manufacturer organizations convened to share their perspectives on the future of gene therapy. According to ICER, “the paper explores the scientific frontier being opened up by emerging gene therapies, with the potential for curing or substantially improving the lives of individuals who have had limited treatment options in the past. The paper also addresses the challenges associated with generating the evidence needed to make robust assessments of safety, effectiveness, and value of these treatments.” Click here to view the white paper.
5. Video: Dr Roy Beveridge Discusses Humana's Efforts to Include Perspective of Patient and Provider
In a new video published by The American Journal of Managed Care, Humana’s chief medical officer, Dr. Roy Beveridge, explains that the main focus of Humana's business activities is to provide a better experience for patients and physicians. This patient-centered approach is informed by his work as a practicing oncologist, where he learned to think about clinical programs from the perspective of the patient.” Click here to view the video.
6. Congressional Briefing: State of Lung Cancer (3/16)
The Congressional Lung Cancer Caucus is being reestablished in the new 115th Congress. In coordination with Lung Cancer Alliance (LCA) the Caucus is hosting the first of its 2017 Briefings Series on Capitol Hill on Thursday, March 16th. "The State of Lung Cancer" Briefing will provide updated information on lung cancer early detection and treatments with a focus on targeted therapies, Immunotherapies and research strategies that will improve survivorship. You are invited to attend or send someone to the State of Lung Cancer Congressional Briefing on Thursday, March 16th at 12:30 pm in room 2045 Rayburn House Office Building. Hot lunch will be served so please send an RSVP to Lung Cancer Alliance at [email protected]. Click here for additional details.
7. Archived PIPC Webcast: PCORI Advocacy 101
On February 15, 2017, the Partnership to Improve Patient Care (PIPC) held an 'Advocacy 101' webinar with PCORI ambassadors and patient advocates to help explain the Institute’s pending re-authorization and offer suggestions on how stakeholders can support patient-centered research. Topics covered in the webinar include a background related to PCORI’s creation, the legislative process that we anticipate for reauthorization in 2019, and appropriate tactics for outreach to legislators to ensure they understand the personal impact that PCORI’s work has on patients and other stakeholders. A complete recording of the event and the slides used in the presentation can be found here.
8. Upcoming Events and Webinars
NQF: Advanced Illness Care Virtual Forum
March 15, 2017
Click here for details.
Boot Camp Translation Training
March 20-22, Denver, CO
Click here for details.
Evidence-Based Guidelines Affecting Policy, Practice and Stakeholders (E-GAPPS III) Conference
March 20-21, 2017, New York, NY
Click here for details.
PCORI Board of Governors Meeting
March 21, 2017
Click here for details.
PCORnet 101
March 21, 2017
Click here for details.
PCORI: Advisory Panel on Improving Healthcare Systems Spring 2017 Meeting
March 31, 2017
Click here for details.
Getting to Know PCORI: From Application to Closeout
April 10 - 11, 2017
Click here for details.
Advisory Panel on Communication and Dissemination Research Spring 2017 Meeting
April 21, 2017
Click here for details.
Advisory Panel on Rare Disease Spring 2017 Meeting
April 26, 2017
Click here for details.
ICER Orphan Drug Assessment and Pricing Summit
May 31, 2017
Click here for details.
9. Medical Journal Articles
Translating Comparative Effectiveness Research Into Practice: Effects of Interventions on Lifestyle, Medication Adherence, and Self-Care for Type 2 Diabetes, Hypertension, and Obesity Among Black, Hispanic, and Asian Residents of Chicago and Houston, 2010 to 2013, click here to view.
Maintaining Primacy of the Patient Perspective in the Development of Patient-Centered Patient Reported Outcomes, click here to view.
Value-Based Insurance Design Benefit Offsets Reductions In Medication Adherence Associated With Switch To Deductible Plan, click here to view.
Doxycycline Versus Prednisolone as an Initial Treatment Strategy for Bullous Pemphigoid: A Pragmatic, Non-Inferiority, Randomised Controlled Trial, click here to view.
Detecting Heterogeneous Treatment Effects to Guide Personalized Blood Pressure Treatment: A Modeling Study of Randomized Clinical Trials, click here to view.
A Tale of Two Trials: Reconciling Differences in Results by Exploring Heterogeneous Treatment Effects, click here to view.
Comparative Effectiveness of Imaging Modalities for the Diagnosis and Treatment of Intussusception: A Critically Appraised Topic, click here to view.
Evidence-Based Versus Personalized Medicine in Pediatric Urology: The Evidence Supports Evidence-Based Medicine, click here to view.
Evidence-Based Versus Personalized Medicine in Pediatric Urology, click here to view.
Social Media for Arthritis-Related Comparative Effectiveness and Safety Research and the Impact of Direct-to-Consumer Advertising, click here to view.
Comparative Effectiveness and Safety of Erythropoiesis-Stimulating Agents (Biosimilars vs Originators) in Clinical Practice: A Population-Based Cohort Study in Italy, click here to view.
10. AHRQ Effective Program Updates
Strategies for Improving the Lives of Women Aged 40 and Above Living With HIV/AIDS -- Disposition of Comments, click here to view.
Physiologic Predictors of the Need for Trauma Center Care: A Systematic Review -- Research Protocol, click here to view.
Treatments for Adults with Schizophrenia: A Systematic Review, click here to view.
Anxiety in Children, click here to view.
Patient Safety in Ambulatory Settings -- Disposition of Comments Report, click here to view.
Data Linkage Strategies To Advance Youth Suicide Prevention -- Disposition of Comments Report, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors -- Research Protocol, click here to view.
Obesity Prevention and Control -- Research Protocol, click here to view.
Telehealth for Acute and Chronic Care Consultations -- Research Protocol, click here to view.
