In This Week’s Issue:
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy, click here to read the blog.
2. #PIPCForum17: Patient Voices, Patient Value: Changing the Culture of How We Pay for Care, click here to read the recap.
3. Morning Consult: Well-Informed Patients Play a Key Role in Value-Based Care, click here to read the article.
4. Renal and Urology News: Guidelines Disconnect: Patients' Voice Absent, click here to read the article.
5. American Academy of Dermatology Issues New Guidelines for Treatment of Nonmelanoma Skin Cancer, click here to read the article
6. Healthcare IT News: Telemedicine's market momentum prompts vendors to expand, connect with larger patient populations, click here to read the article.
7. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support, click here to submit.
8. Health Catalyst: Improve Patient Satisfaction: 5 Things Healthcare Organizations Can Learn From Disney, click here to read the article
9. Webinar: CMS Measures Inventory Tool (CMIT) and the CMS Measures Inventory: Updates to the System and the Data, click here to register.
10. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus, click here to submit.
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below.
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy, click here to read the blog.
2. #PIPCForum17: Patient Voices, Patient Value: Changing the Culture of How We Pay for Care, click here to read the recap.
3. Morning Consult: Well-Informed Patients Play a Key Role in Value-Based Care, click here to read the article.
4. Renal and Urology News: Guidelines Disconnect: Patients' Voice Absent, click here to read the article.
5. American Academy of Dermatology Issues New Guidelines for Treatment of Nonmelanoma Skin Cancer, click here to read the article
6. Healthcare IT News: Telemedicine's market momentum prompts vendors to expand, connect with larger patient populations, click here to read the article.
7. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support, click here to submit.
8. Health Catalyst: Improve Patient Satisfaction: 5 Things Healthcare Organizations Can Learn From Disney, click here to read the article
9. Webinar: CMS Measures Inventory Tool (CMIT) and the CMS Measures Inventory: Updates to the System and the Data, click here to register.
10. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus, click here to submit.
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below.
1. PIPC Patient Blog: Seeing the Promise in Gene Therapy
In a new PIPC Patient blog, Janni Lehrer-Stein writes about the importance of the first gene therapy for inherited diseases. She notes that in order to reach patients and change lives for the better, the government, industry, patients and consumers must work together to develop a new framework for covering this kind of drug therapy. “Alternative payment models such as outcomes-based rebate models are aligned with a pay-for-performance approach, requiring the manufacturer to stand behind the efficacy and durability of the treatment — in this case, a one-dose treatment. And by embracing the principles of paying for ‘value,' both public and private payers are laying the necessary foundation for patient access in a world of 21st century cures.”
“The health science industry is making great strides toward developing cures for once incurable diseases. That includes preventions and cures for inherited retinal diseases that for me and millions of people like me, robbed us of our sight. An organization I’m proud to be a part of, the Foundation Fighting Blindness, has helped drive such research in the inherited blindness space. But any new treatment is only as good as a patient’s access to it.” Click here to read the blog.
2. #PIPCForum17: Patient Voices, Patient Value: Changing the Culture of How We Pay for Care
Health care value is being defined through new payment incentives and value standards proposed and implemented by health care payers, policy-makers, and providers, but has long discounted the inclusion of patient perspective. As part of an effort to advance a “new direction” for the government agency, the Centers for Medicare & Medicaid Servcies (CMS) has issued a Request for Information (RFI) seeking insights on how to better advance innovation in care and payment more representative of patient-centered care as part of the agency’s Innovation Center (CMMI). At the Partnership to Improve Patient Care’s (PIPC) 8th Annual Forum, Ms. Amy Bassano, the Acting Director of CMMI, explained how CMS might test market-driven reforms that empower beneficiaries as consumers, provide price transparency, increase choices and competition to drive quality, reduce costs, and improve outcomes.
PIPC has asked CMS to pursue reform in defining clear, consistent processes for engaging patients and other stakeholders in the development and implementation of CMMI evaluations, as well as defining and adopting detailed criteria for patient-centeredness. A panel of patient advocate experts convened by PIPC stressed that by advancing demonstrations that embody patient-centered reform and encourage individualized care, CMS can demonstrate their commitment to changing the culture of health care. Doing so will require significant engagement with patients, but will changing culture is not easy. The advocates specified that driving a culture of patient-centeredness in how we pay for health care will require CMMI to similarly mandate and enforce engagement of patients in developing, implementing, and evaluating alternative payment models. Click here to read the recap.
3. Morning Consult: Well-Informed Patients Play a Key Role in Value-Based Care
Virginia Ladd writes in Morning Consult that people living with autoimmune diseases need valuable, patient-centered care that is based on their individual needs. “...[The Innovation and Value Initiative] recently launched the Open Source Value Project, a first-of-its-kind tool that brings stakeholders from across the health care system together to better measure and define value in a data-driven, consensus-based way. The Open Source Value Project tools are iterative, allowing for user feedback to help it evolve and grow over time alongside new innovations in science...Eventually, the Open-Source Value Project will give everyone in the health care system – from payers to patients – the tools to determine which treatments and services hold the most value for them.” Click here to read the article.
4. Renal and Urology News: Guidelines Disconnect: Patients' Voice Absent
Jaime Rosenberg notes that the Value in Health Care Survey identified how 3 key stakeholder groups (patients, physicians, and employers) define value and prioritize 3 components of the concept (quality, service, and cost). “Some have even argued that it is impossible to implement a one-size-fits-all approach to value. During The International Society for Pharmacoeconomics and Outcomes Research conference in August, Ilene Hollin, PhD, MPH, the National Pharmaceutical Council and University of Southern California Schaeffer Center’s Postdoctoral Health Policy Fellow, discussed a tailored approach to value assessment. Hollin told AJMC® that we need to tailor our approach to each stakeholder because this is what will help drive innovation and make sure future therapies are developed with what patients want in mind.” Click here to read the article.
5. American Academy of Dermatology Issues New Guidelines for Treatment of Nonmelanoma Skin Cancer
The AAD has issued new guidelines for the treatment of nonmelanoma skin cancer, emphasizing the importance of considering the patient perspective when determining how to treat the disease. “To emphasize the importance of considering the patient perspective in determining how to treat BCC and SCC, the AAD’s work group included patient advocate Kristi Schmitt Burr, who has been dealing with NMSCs for more than five decades due to a genetic condition called basal cell nevus syndrome (also known as Gorlin-Goltz syndrome). Burr says it’s important for patients to understand their available treatment options and to have input in their medical care.” Click here to read the article.
6. Healthcare IT News: Telemedicine's market momentum prompts vendors to expand, connect with larger patient populations
Bill Siwicki reports on new patient-centered focuses in the Telemedicine market in Healthcare IT News. “InTouch Health will incorporate TruClinic's software into its offering, so patients can now initiate and receive a consult with their health system physician from their home, further extending InTouch Health's telehealth system across the continuum of care. The combined system will empower health systems to provide virtual care using their own internal physicians or by leveraging InTouch Health's national network of contracted physicians, if needed – offering health systems more control in how they deliver virtual care for patients, officials said. On another front, Teladoc is also expanding its services, debuting an integrated mobile app. Teladoc members now get a single, patient-centered point of access to answer a wide array of medical needs, as the app combines the care services traditionally provided by Teladoc along with the expert specialty medical and second opinion services of Best Doctors, the consultation company it acquired this past June, officials said.” Click here to read the article.
7. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support
AcademyHealth’s eGEMS, the Journal for Electronic Health Data and Methods, is accepting manuscripts that highlight research in patient-centered clinical decision support to address emerging issues within health systems, advance health care quality and improve outcomes and health equity. “A new eGEMS special section, announced recently in an Academy Health blog post, will highlight novel approaches and thinking in this area. AHRQ supports eGEMS, the Patient-Centered Clinical Decision Support Learning Network and other initiatives that advance the science of how patients and providers can make decisions together using the best available evidence. There is no fee to submit an eGEMS manuscript and the deadline is January 31.” Click here to submit.
8. Health Catalyst: Improve Patient Satisfaction: 5 Things Healthcare Organizations Can Learn From Disney
Health Catalyst’s Justin Gressel notes that Healthcare organizations can improve the patient experience using data and taking a few lessons from Disney. “Healthcare delivery in the United States is complicated. A myriad of forces are driving the industry to change its delivery, and simultaneously reduce costs, improve outcomes, and accommodate more patients. Although the healthcare provider-patient relationship is not a 100% consumer-driven relationship (e.g., just because a patient wants an antibiotic doesn’t mean one should be prescribed) healthcare organizations can mimic level of guest service by understanding Disney’s guest-centricity. The guest-centered approach is both a philosophy and culture from which all organizational decisions should flow, balanced of course by the business and financial goals of the organization.” Click here to read the article.
9. Webinar: CMS Measures Inventory Tool (CMIT) and the CMS Measures Inventory: Updates to the System and the Data
CMS is hosting an interactive webinar that includes a demonstration of the new CMIT system. “During the demonstration, Helen Dollar-Maples of CMS, and Mark Davis and Mary Sheehan of Battelle, will provide background on how the information within CMIT is populated, updated, and validated, and then will walk participants through the functionality of the system, how you can search for measures of interest, and how this tool can help in your measure development work. Before the presentation, please take some time and visit CMIT online (link provided below) and submit any questions to [email protected] and they will be addressed during the presentation.” Click here to register.
10. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus
The House Democratic Whip’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Click here to submit, and we urge you to share the information with PIPC as well at [email protected]!
11. Upcoming Events and Webinars
PCORI Board of Governors Meeting
January 23, 2018
Click here for details.
Pragmatic Clinical Studies Applicant Town Hall - Cycle 1 2018
January 29, 2018
Click here for details.
Improving Methods PFA Applicant Town Hall - Cycle 1 2018
January 30, 2018
Click here for details.
Broad PFAs Applicant Town Hall - Cycle 1 2018
February 1, 2018
Click here for details.
Health Affairs and NPC Forum on Health Spending: Tackling The Big Issues
February 1, 2018
Click here for details.
NPC @ 2018 AcademyHealth National Health Policy Conference
February 5 - 6, 2018
Click here for details.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates
February 15, 2018
Click here for details.
12. Medical Journal Articles
January Issue: Journal of Comparative Effectiveness Research, click here to view.
Toward Patient-Centered Outcomes for Cognitive Evaluations: The Perspective of Those Affected by Parkinson's Disease, click here to view.
Viewpoint: Funding Innovation in a Learning Health Care System, click here to view.
Including the Patient Voice in Patient-Centered Outcomes Research in Integrative Oncology, click here to view.
Patient and Provider Perspectives on Shared Decision Making: A Systematic Review of the Peer-Reviewed Literature, click here to view.
Gene Therapy: Evidence, Value and Affordability in the US Health Care System, click here to view.
Patient Value: Perspectives from the Advocacy Community, click here to view.
The Added Value of Integrate-HTA Guidance in the Work Processes of Health Technology Assessment Agencies, click here to view.
Practicalities Of Using Real-World Evidence (RWE) In Comparative Effectiveness Research (CER): Learnings From Imi-Getreal, click here to view.
The Role of Condition-Specific Preference-Based Measures in Health Technology Assessment, click here to view.
Hospital Cost Impact of Orbital Atherectomy with Angioplasty for Critical Limb Ischemia Treatment: A Modeling Approach, click here to view.
Real-World Evidence: Useful in the Real World of US Payer Decision Making? How? When? And What Studies? Click here to view.
Targeted Identification of Adverse Events in Coronary Artery Disease Patients Based on Patient-Reported Outcomes, click here to view.
13. AHRQ Effective Program Updates
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
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
In a new PIPC Patient blog, Janni Lehrer-Stein writes about the importance of the first gene therapy for inherited diseases. She notes that in order to reach patients and change lives for the better, the government, industry, patients and consumers must work together to develop a new framework for covering this kind of drug therapy. “Alternative payment models such as outcomes-based rebate models are aligned with a pay-for-performance approach, requiring the manufacturer to stand behind the efficacy and durability of the treatment — in this case, a one-dose treatment. And by embracing the principles of paying for ‘value,' both public and private payers are laying the necessary foundation for patient access in a world of 21st century cures.”
“The health science industry is making great strides toward developing cures for once incurable diseases. That includes preventions and cures for inherited retinal diseases that for me and millions of people like me, robbed us of our sight. An organization I’m proud to be a part of, the Foundation Fighting Blindness, has helped drive such research in the inherited blindness space. But any new treatment is only as good as a patient’s access to it.” Click here to read the blog.
2. #PIPCForum17: Patient Voices, Patient Value: Changing the Culture of How We Pay for Care
Health care value is being defined through new payment incentives and value standards proposed and implemented by health care payers, policy-makers, and providers, but has long discounted the inclusion of patient perspective. As part of an effort to advance a “new direction” for the government agency, the Centers for Medicare & Medicaid Servcies (CMS) has issued a Request for Information (RFI) seeking insights on how to better advance innovation in care and payment more representative of patient-centered care as part of the agency’s Innovation Center (CMMI). At the Partnership to Improve Patient Care’s (PIPC) 8th Annual Forum, Ms. Amy Bassano, the Acting Director of CMMI, explained how CMS might test market-driven reforms that empower beneficiaries as consumers, provide price transparency, increase choices and competition to drive quality, reduce costs, and improve outcomes.
PIPC has asked CMS to pursue reform in defining clear, consistent processes for engaging patients and other stakeholders in the development and implementation of CMMI evaluations, as well as defining and adopting detailed criteria for patient-centeredness. A panel of patient advocate experts convened by PIPC stressed that by advancing demonstrations that embody patient-centered reform and encourage individualized care, CMS can demonstrate their commitment to changing the culture of health care. Doing so will require significant engagement with patients, but will changing culture is not easy. The advocates specified that driving a culture of patient-centeredness in how we pay for health care will require CMMI to similarly mandate and enforce engagement of patients in developing, implementing, and evaluating alternative payment models. Click here to read the recap.
3. Morning Consult: Well-Informed Patients Play a Key Role in Value-Based Care
Virginia Ladd writes in Morning Consult that people living with autoimmune diseases need valuable, patient-centered care that is based on their individual needs. “...[The Innovation and Value Initiative] recently launched the Open Source Value Project, a first-of-its-kind tool that brings stakeholders from across the health care system together to better measure and define value in a data-driven, consensus-based way. The Open Source Value Project tools are iterative, allowing for user feedback to help it evolve and grow over time alongside new innovations in science...Eventually, the Open-Source Value Project will give everyone in the health care system – from payers to patients – the tools to determine which treatments and services hold the most value for them.” Click here to read the article.
4. Renal and Urology News: Guidelines Disconnect: Patients' Voice Absent
Jaime Rosenberg notes that the Value in Health Care Survey identified how 3 key stakeholder groups (patients, physicians, and employers) define value and prioritize 3 components of the concept (quality, service, and cost). “Some have even argued that it is impossible to implement a one-size-fits-all approach to value. During The International Society for Pharmacoeconomics and Outcomes Research conference in August, Ilene Hollin, PhD, MPH, the National Pharmaceutical Council and University of Southern California Schaeffer Center’s Postdoctoral Health Policy Fellow, discussed a tailored approach to value assessment. Hollin told AJMC® that we need to tailor our approach to each stakeholder because this is what will help drive innovation and make sure future therapies are developed with what patients want in mind.” Click here to read the article.
5. American Academy of Dermatology Issues New Guidelines for Treatment of Nonmelanoma Skin Cancer
The AAD has issued new guidelines for the treatment of nonmelanoma skin cancer, emphasizing the importance of considering the patient perspective when determining how to treat the disease. “To emphasize the importance of considering the patient perspective in determining how to treat BCC and SCC, the AAD’s work group included patient advocate Kristi Schmitt Burr, who has been dealing with NMSCs for more than five decades due to a genetic condition called basal cell nevus syndrome (also known as Gorlin-Goltz syndrome). Burr says it’s important for patients to understand their available treatment options and to have input in their medical care.” Click here to read the article.
6. Healthcare IT News: Telemedicine's market momentum prompts vendors to expand, connect with larger patient populations
Bill Siwicki reports on new patient-centered focuses in the Telemedicine market in Healthcare IT News. “InTouch Health will incorporate TruClinic's software into its offering, so patients can now initiate and receive a consult with their health system physician from their home, further extending InTouch Health's telehealth system across the continuum of care. The combined system will empower health systems to provide virtual care using their own internal physicians or by leveraging InTouch Health's national network of contracted physicians, if needed – offering health systems more control in how they deliver virtual care for patients, officials said. On another front, Teladoc is also expanding its services, debuting an integrated mobile app. Teladoc members now get a single, patient-centered point of access to answer a wide array of medical needs, as the app combines the care services traditionally provided by Teladoc along with the expert specialty medical and second opinion services of Best Doctors, the consultation company it acquired this past June, officials said.” Click here to read the article.
7. AHRQ: Academy Health Journal Accepting Manuscripts on Patient-Centered Clinical Decision Support
AcademyHealth’s eGEMS, the Journal for Electronic Health Data and Methods, is accepting manuscripts that highlight research in patient-centered clinical decision support to address emerging issues within health systems, advance health care quality and improve outcomes and health equity. “A new eGEMS special section, announced recently in an Academy Health blog post, will highlight novel approaches and thinking in this area. AHRQ supports eGEMS, the Patient-Centered Clinical Decision Support Learning Network and other initiatives that advance the science of how patients and providers can make decisions together using the best available evidence. There is no fee to submit an eGEMS manuscript and the deadline is January 31.” Click here to submit.
8. Health Catalyst: Improve Patient Satisfaction: 5 Things Healthcare Organizations Can Learn From Disney
Health Catalyst’s Justin Gressel notes that Healthcare organizations can improve the patient experience using data and taking a few lessons from Disney. “Healthcare delivery in the United States is complicated. A myriad of forces are driving the industry to change its delivery, and simultaneously reduce costs, improve outcomes, and accommodate more patients. Although the healthcare provider-patient relationship is not a 100% consumer-driven relationship (e.g., just because a patient wants an antibiotic doesn’t mean one should be prescribed) healthcare organizations can mimic level of guest service by understanding Disney’s guest-centricity. The guest-centered approach is both a philosophy and culture from which all organizational decisions should flow, balanced of course by the business and financial goals of the organization.” Click here to read the article.
9. Webinar: CMS Measures Inventory Tool (CMIT) and the CMS Measures Inventory: Updates to the System and the Data
CMS is hosting an interactive webinar that includes a demonstration of the new CMIT system. “During the demonstration, Helen Dollar-Maples of CMS, and Mark Davis and Mary Sheehan of Battelle, will provide background on how the information within CMIT is populated, updated, and validated, and then will walk participants through the functionality of the system, how you can search for measures of interest, and how this tool can help in your measure development work. Before the presentation, please take some time and visit CMIT online (link provided below) and submit any questions to [email protected] and they will be addressed during the presentation.” Click here to register.
10. Submit 2018 Fly-Ins, Advocacy Days and Conferences to Democratic Caucus
The House Democratic Whip’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Click here to submit, and we urge you to share the information with PIPC as well at [email protected]!
11. Upcoming Events and Webinars
PCORI Board of Governors Meeting
January 23, 2018
Click here for details.
Pragmatic Clinical Studies Applicant Town Hall - Cycle 1 2018
January 29, 2018
Click here for details.
Improving Methods PFA Applicant Town Hall - Cycle 1 2018
January 30, 2018
Click here for details.
Broad PFAs Applicant Town Hall - Cycle 1 2018
February 1, 2018
Click here for details.
Health Affairs and NPC Forum on Health Spending: Tackling The Big Issues
February 1, 2018
Click here for details.
NPC @ 2018 AcademyHealth National Health Policy Conference
February 5 - 6, 2018
Click here for details.
Ensuring the Patient Voice in Quality: An Educational Program for Patient Groups and Advocates
February 15, 2018
Click here for details.
12. Medical Journal Articles
January Issue: Journal of Comparative Effectiveness Research, click here to view.
Toward Patient-Centered Outcomes for Cognitive Evaluations: The Perspective of Those Affected by Parkinson's Disease, click here to view.
Viewpoint: Funding Innovation in a Learning Health Care System, click here to view.
Including the Patient Voice in Patient-Centered Outcomes Research in Integrative Oncology, click here to view.
Patient and Provider Perspectives on Shared Decision Making: A Systematic Review of the Peer-Reviewed Literature, click here to view.
Gene Therapy: Evidence, Value and Affordability in the US Health Care System, click here to view.
Patient Value: Perspectives from the Advocacy Community, click here to view.
The Added Value of Integrate-HTA Guidance in the Work Processes of Health Technology Assessment Agencies, click here to view.
Practicalities Of Using Real-World Evidence (RWE) In Comparative Effectiveness Research (CER): Learnings From Imi-Getreal, click here to view.
The Role of Condition-Specific Preference-Based Measures in Health Technology Assessment, click here to view.
Hospital Cost Impact of Orbital Atherectomy with Angioplasty for Critical Limb Ischemia Treatment: A Modeling Approach, click here to view.
Real-World Evidence: Useful in the Real World of US Payer Decision Making? How? When? And What Studies? Click here to view.
Targeted Identification of Adverse Events in Coronary Artery Disease Patients Based on Patient-Reported Outcomes, click here to view.
13. AHRQ Effective Program Updates
Nonsurgical Treatments for Urinary Incontinence in Adult Women: A Systematic Review Update, click here to view.
Drug Therapy for Early Rheumatoid Arthritis: A Systematic Review Update, click here to view.
Effects of Dietary Sodium and Potassium Intake on Chronic Disease Outcomes and Related Risk Factors, click here to view.
Management of Insomnia Disorder - Consumer and Clinician Summaries, click here to view
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
