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The PIPC Blog

PIPC Weekly Update: July 24, 2017

7/24/2017

 
In This Week’s Issue:
 
1. Register Now: PIPC on BPC Panel on The Future of Comparative Effectiveness Research, click here to RSVP.
2. PIPC Patient Blog: Megan O’Boyle, click here to read the blog. 
3. Tuesdays with Liz: PIPC Executive Director Sara van Geertruyden Discusses Importance of Patient-Centered Care, click here to watch the video. 
4. WSJ: The Smart Medicine Solution to the Healthcare Crisis, click here to read the op-ed.  
5. Clinical Psychiatry News: Engage Patients, Clinicians as Partners in Research, click here to read the article.
6. BMJ: What Your Patient is Thinking — Learning Together, click here to read the article.
7. New PCORI Initiative to Advance Shared Decision Making, click here to read the press release.
8. Comment Now! CMS Rule on CY 2018 Updates to the Quality Payment Program, click here for details.
9. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions? Click here to complete the survey. 
10. Lupus: FDA Patient-Focused Drug Development Meeting, click here to register!
11. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability, click here to apply. 
12. Upcoming Events and Webinars, see details below
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
1. Register Now: PIPC on BPC Panel on The Future of Comparative Effectiveness Research 
 
Join PIPC Executive Director Sara Traigle van Geertruyden at the Bipartisan Policy Center’s second educational forum on comparative effectiveness research that will discuss federal funding levels, private sector leadership, regulatory barriers, dissemination and uptake of research results, and new areas for research. Click here to RSVP. Can’t join in person? The event will be webcast here. Join the discussion or submit a question on Twitter by using @BPC_Bipartisan #BPClive
 
2. PIPC Patient Blog: Megan O’Boyle 
 
PIPC’s latest patient blog features Megan O’boyle, who provides her insights on the benefits of PCORI-sponsored research. "If my daughter’s physicians, who have the benefit of years of medical training, don’t know what to prescribe for her, how am I supposed to make effective health care decisions? Thankfully, PCORI is engaging caregivers like me and patients like my daughter Shannon in the process of studying the questions that matter to us. Its work is critical to building a genuine patient-centered health care system." Click here to read the blog. 
 
3. Tuesdays with Liz: PIPC Executive Director Sara van Geertruyden Discusses Importance of Patient-Centered Care
 
In the Association for University Centers on Disabilities video series ‘Tuesdays With Liz,” PIPC Executive director Sara van Geertruyden discusses the importance of patient-centered care with host Liz Weintraub. “When we say patient-centered healthcare system, what we really mean is a healthcare system that achieves outcomes that matter to patients and people with disabilities. That means we have to engage patients and people with disabilities at all levels of the healthcare system. It starts with engagement to develop the policies that determine what is and is not going to be covered. And it ends with patients in their doctor’s offices being truly engaged in a meaningful way in their own healthcare decision making.” Click here to watch the video. 
 
4. WSJ: The Smart Medicine Solution to the Healthcare Crisis
 
In an op-ed to The Wall Street Journal, Eric Tobol argues that investments in information-age medicine — not insurance reform — should be the focus when it comes to fixing the healthcare sytem. That experience came in handy when I recently developed pain in my flank. Seeing my very dilated kidney on my smartphone screen helped to confirm the diagnosis that I had a kidney stone. The CT scan later ordered by my doctor showed a nearly identical image, but the charge for that was $2,200. If this single tool was used in a typical office visit, a large proportion of expensive and unnecessary formal scans could be avoided. click here to read the op-ed.  
 
5. Clinical Psychiatry News: Engage Patients, Clinicians as Partners in Research
 
Whitney McKnight reports on the integration of clinical and research enterprises into a nationwide database for Clinical Psychiatry News. “...[Andrew A. Nierenberg, MD] helps run the MoodNetwork, a growing, nationwide database of patient-reported outcomes for those with mood disorders that he said is dedicated to filling knowledge gaps around those illnesses not easily gleaned from clinical response data alone...The data from the MoodNetwork also feed into a nationwide network of databases run by the Patient-Centered Outcomes Research Institute network, originally created as part of the Affordable Care Act, and which, at least for now, Dr. Nierenberg said, appears safe from repeal.” Click here to read the article. 
 
6. BMJ: What Your Patient is Thinking — Learning Together
 
Danny van Leeuwen describes his relationship with his neurologist after he was diagnosed with multiple sclerosis. “The neurologist signed me up for the electronic patient portal so I could communicate with him easily. I probably sent 25-30 texts over three months with questions and concerns. He or his nurse responded with ‘don’t worry about it’ (most of the time), or ‘if you still experience that tomorrow let me know,’ or ‘I need to see you today’ (this only happened once). Together we settled on a care plan of exercise, acupuncture, massage, meditation, and paracetamol as needed. The pain isn’t gone, but I can tolerate it and function pretty well. I am not in a regular job but work when I can. I see the neurologist once or twice a year now and he always asks, ‘Have you fallen?’ ‘Are you still playing the sax?’ He says that these are my personal outcome measures. I like that I have a barometer, and that he knows me and cares.” Click here to read the article. 
 
7. New PCORI Initiative to Advance Shared Decision Making
 
PIPC congratulates PCORI for its work to advance shared decision-making, the key to ensuring that patients use patient-centered outcomes research to improve their personal health care decisions!  Last week, the PCORI Board of Governors approved a new limited-competition initiative that will offer up to $6.5 million in total costs to support the dissemination and implementation of shared decision making strategies. “This initiative will support projects that propose active, multi-component approaches to implementing effective shared decision making strategies that address existing barriers and obstacles to uptake and maintenance of shared decision making. The SDM strategy must have demonstrated effectiveness on patient, caregiver, or health care provider decision making using well-accepted metrics; the corresponding implementation approach must have potential for use and scalability beyond the targeted implementation setting. Patients and others whose involvement is central to the success of the project should be involved in design and execution of proposed projects. In addition, applicants should assure that the proposed project team draws on sufficient expertise in both shared decision making and implementation science.  Projects must incorporate rigorous evaluation of the implementation of shared decision making approaches, as well as the impact of the shared decision making processes in the targeted settings.” Click here to read the press release. 
 
Additionally, PCORI released a new video featuring Chief Science Officer Evelyn Whitlock, who explains how comparative effectiveness research can improve health and health care in the United States. Click here to watch the video. 
 
8. Comment Now! CMS Rule on CY 2018 Updates to the Quality Payment Program
 
CMS is now accepting comments on a new rule that provides proposed updates for the second and future years of the Quality Payment Program “The Medicare Access and CHIP Reauthorization Act of 2015 (MACRA) established the Quality Payment Program for eligible clinicians. Under the Quality Payment Program, eligible clinicians can participate via one of two tracks: Advanced Alternative Payment Models (APMs); or the Merit-based Incentive Payment System (MIPS). We began implementing the Quality Payment Program through rulemaking for calendar year (CY) 2017.” Click here for details. 
 
9. Take the iHOPE Hospital Questions Survey: Have you ever left the hospital with unanswered questions?
 
The Improving Hospital Outcomes through Patient Engagement (iHOPE) Steering Committee needs participants for a survey that will help research teams learn the questions that patients, families, caregivers, and other healthcare stakeholders want answered. “Are you a healthcare provider or a member of a healthcare-related organization? Are there any uncertainties about patient care during and after the hospital stay, or areas where you feel there should be more evidence to guide care? This could include any aspect of care - treatments, processes, decision-making, discharge planning, etc. “ Click here to complete the survey.
 
10. Lupus: FDA Patient-Focused Drug Development Meeting
 
On September 25, 2017, 10:00 am - 4:00 pm at the College Park Marriott Hotel & Conference Center, the FDA will hold a Patient-Focused Drug Development meeting to advance their understanding of the lupus patient perspective.  The goal of the Lupus PFDD Meeting is to inform how FDA officials – particularly those reviewing potential new treatments for lupus – think about this disease. We want agency officials to know what it is like to live with lupus day-in and day-out, how the disease impacts your daily life, what benefits you expect in future treatments and what level of risk you may be willing to accept in exchange for these benefits. Following the meeting, the organizers will write a report summarizing the survey results and the meeting, calling out the most important points and perspectives. This document will be conveyed to the FDA, pharmaceutical developers and researchers to ensure they know how lupus impacts people and families, what our community values most and what we want to see in new treatments. Click here to register!
 
11. Epilepsy Foundation: 2017-2018 AAHD Frederick J. Krause Scholarship on Health and Disability
 
The American Association on Health and Disability’s Frederick J. Krause Scholarship on Health and Disability is currently accepting applications. The scholarship honors Frederick J. Krause, a lifelong advocate for those with disabilities who passed away in 2014. Beginning with his role as a special education teacher, Mr. Krause’s distinguished career in advocacy included service in the federal government and the cofounding of the American Association on Health and Disability. The scholarship pays tribute to Mr. Krause by awarding scholarships to students with disabilities that are pursuing an education on disability-related topics. Click here to apply. 
 
12. Upcoming Events and Webinars
 
The Future of Comparative Effectiveness Research
July 25, 2017
Click here for details.
 
Understanding Key Evidence Gaps in the Treatment of Anxiety Disorders in Children, Adolescents, and Young Adults: A Stakeholder Workshop
July 26, 2017
Click here for details.
 
Partnerships to Conduct Research within PCORnet (PaCR) Applicant Town Hall - Cycle 2 2017
August 23, 2017
Click here for details.
 
Research!America's 2017 National Health Research Forum
September 7, 2017
Click here for details.
 
Lupus Patient-Focused Drug Development (PFDD) Meeting
September 25, 2017
Click here for details.
 
Introduction to HEOR: Principles and Practice in Health Care Decision Making
October 5-8
Click here for details.
 
ASHRM 2017 Conference and Exhibition
October 15-18
Click here for details.
 
2017 PCORI Annual Meeting
October 31-November 2
Click here for details.
 
13. Medical Journal Articles
 
From Evidence Based Medicine to Medicine Based Evidence, click here to view. 
 
Depression, Anxiety and Stress Severities in Multiple Sclerosis Patients Using Injectable Versus Oral Treatments, click here to view. 
 
Comparative Effectiveness of Surgery Versus Antibiotics in Acute Appendicitis: A Systematic Review Stephanie D Talutis and Frederick Thurston Drake, click here to view. 
 
Patient-Reported Outcomes in Hematology: Is It Time to Focus More on Them in Clinical Trials and Hematology Practice? Click here to view. 
 
Discrete Event Simulation-Based Resource Modelling in Health Technology Assessment, click here to view. 
 
Patient Preferences: A Trojan Horse for Evidence-Based Medicine? Click here to view.
 
Patient-Reported Outcomes — Are They Living Up to Their Potential? Click here to view. 
 
The Mediatory Role of Medication Adherence in Improving Patients' Medication Experience Through Patient–Physician Communication among Older Hypertensive Patients, click here to view. 
 
Comparative Effectiveness: 18F-FDG-PET/CT versus CT for Post-Treatment Follow-Up of Patients with Lung Cancer, click here to view. 
 
Does the Offer of Free Prescriptions Increase Generic Prescribing? Click here to view.
 
Attitudes Toward Comparative Effectiveness Research and Patient Engagement among Reproductive Health Clinicians, click here to view. 
 
Patient Engagement in Patient-Centered Outcomes Research: Challenges, Facilitators and Actions to Strengthen the Field, click here to view. 
 
Comparative effectiveness research: what to do when experts disagree about risks, click here to view. 
 
Evidence Based Medicine Manifesto for Better Healthcare, click here to view. 
 
A Retrospective Analysis of the Comparative Effectiveness of Smoking Cessation Medication Among Individuals with Mental Illness in Community-Based Mental Health and Addictions Treatment Settings, click here to view. 
 
Comparative Effectiveness and Costs of Insulin Pump Therapy for Diabetes, click here to view. 
 
Experiences in Adapting European Network for Health Technology Assessment Rapid Reviews to Inform Local Decision Making, click here to view. 
 
Impact of a Value-Based Insurance Design for Physical Therapy to Treat Back Pain on Care Utilization and Cost, click here to view. 
 
Visions of Stakeholders about Instutionalization of Health Technology Assessment in Chile: S Qualitative Study, click here to view.
 
Oncology Drugs for Orphan Indications: How Are HTA Processes Evolving for this Specific Drug Category, click here to view. 
 
Delivery of Meaningful Cancer Care: A Retrospective Cohort Study Assessing Cost and Benefit with the ASCO and ESMO Frameworks, click here to view. 
 
14. AHRQ Effective Program Updates
 
Harms of First-Line Depression Treatment in Older Adults, click here to view. 
 
Management of Renal Masses and Localized Renal Cell Carcinoma: Current State of the Evidence - Clinician Summary, click here to view. 
 
Stroke Prevention in Atrial Fibrillation Patients: A Systematic Review Update, click here to view. 
 
Venous Thromboembolism Prophylaxis in Major Orthopedic Surgery: Systematic Review Update, click here to view. 
 
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update -- Research Protocol, click here to view. 
 
Drug Therapy for Early Rheumatoid Arthritis in Adults – An Update -- Research Protocol, click here to view.
 
Psychological and Pharmacological Treatments for Adults with Posttraumatic Stress Disorder (PTSD): A Systematic Review Update -- Research Protocol, click here to view 
 
Tympanostomy Tubes in Children with Otitis Media -- Final Report, click here to view 
 
Treatment of Osteoarthritis of the Knee: An Update Review -- Final Report, click here to view. 
 
Assessment Tools for Palliative Care -- Final Report, click here to view. 
 
Noninvasive, Nonpharmacological Treatment for Chronic Pain, click here to view.
 
The Role of Immunotherapy in the Treatment of Asthma, click here to view
 
Preventing Complications and Treating Symptoms of Diabetic Peripheral Neuropathy -- Final Report, click here to view.
 
Systematic Review of Intermittent Inhaled Corticosteroids and of Long-acting Muscarinic Antagonists for Asthma, click here to view.
 
Interventions to Prevent Age-Related Cognitive Decline, Mild Cognitive Impairment, and Clinical Alzheimer's-Type Dementia -- Final Report, click here to view

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