In This Week’s Issue:
1. Sign and Share Petition to Give Patients and People Served by Health Systems a Voice in Healthcare, click here to view and sign the petition.
2. PCORI Annual Meeting and Patient Networking Reception, click here to register.
3. The Huffington Post: Why Isn’t Healthcare the Star of the 2016 Election? click here to view the article.
4. Care for Your Mind: Tony Coelho Reiterates that Patients Need to be Involved in Policy-making, click here to view the article.
5. Arthritis Foundation Blog: Patient Voice Has Strong Representation at 2016 Arthritis Industry Forum, click here to view the blog post.
6. Cardiovascular Business: Stroke Survivors Benefit from Spending Time at Home, click here to view the study.
7. Califf: Nothing Prohibits FDA From Using Real-World Evidence In Decisions, click here to view the article (Paid subscription required.)
8. JAMA: AHRQ Director Sets Course for Agency's Health Services Research, click here to view the article.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. Sign and Share Petition to Give Patients and People Served by Health Systems a Voice in Healthcare, click here to view and sign the petition.
2. PCORI Annual Meeting and Patient Networking Reception, click here to register.
3. The Huffington Post: Why Isn’t Healthcare the Star of the 2016 Election? click here to view the article.
4. Care for Your Mind: Tony Coelho Reiterates that Patients Need to be Involved in Policy-making, click here to view the article.
5. Arthritis Foundation Blog: Patient Voice Has Strong Representation at 2016 Arthritis Industry Forum, click here to view the blog post.
6. Cardiovascular Business: Stroke Survivors Benefit from Spending Time at Home, click here to view the study.
7. Califf: Nothing Prohibits FDA From Using Real-World Evidence In Decisions, click here to view the article (Paid subscription required.)
8. JAMA: AHRQ Director Sets Course for Agency's Health Services Research, click here to view the article.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
1. Sign and Share Petition to Give Patients and People Served by Health Systems a Voice in Healthcare
Sign and share PIPC Chairman Tony Coelho’s recently launched petition calling on health care stakeholders to recognize patients and people served by health system’s movement for greater say in their own health care. “We urge both the media and politicians to take heed of what matters to us… because in the end, we are all patients,” Chairman Coelho writes.
Join the petition to all those who define your health care to say…
PIPC encourages every individual to sign and share the petition in order to increase its impact and raise awareness of the important issue. Click here to view and sign the petition.
2. PCORI Annual Meeting and Patient Networking Reception
The Patient-Centered Outcomes Research Institute (PCORI) is hosting its 2016 Annual Meeting entitled Changing the Conversation about Health Research on November 16-19 at the Gaylord National Resort and Convention Center in National Harbor, Maryland. They invite patients and caregivers to join more than 1,00 members of the healthcare community to hear updates on how scientists, patients, and other stakeholders are working together to make research more useful and relevant. Among those on Thursday’s panel (November 17) include PIPC Chairman Tony Coelho who will be speaking at 1:00pm and the National Alliance on Mental Illness’ (NAMI) Andrew Sperling, a PIPC Steering member, who will be speaking on the 3:30 PCORI panel on how patient needs and values can be made central to health research and decision making. The deadline to register for the PCORI 2016 Annual Meeting is Thursday, October 27, 2016.
Click here for more information on PCORI’s Annual Meeting and to register for their event. PIPC is excited to be hosting a reception for participating patients during the annual meeting as well.
3. The Huffington Post: Why Isn’t Healthcare the Star of the 2016 Election?
In a recent Huffington Post article, Mary Richards, executive director of Partners for Better Care – a coalition aiming to make health care more cost-efficient, transparent, and fair – raises issue on the lack of debate on healthcare in the 2016 election and explains why reform is important for the next administration. Furthermore, she highlights what Partners for Better Care has done recently to advocate on the behalf of patients, including joining in signing PIPC’s open letter along with over 60 organizations calling on candidates and debate moderators to use this election to spread the word about the issues facing patients today.
“Our country needs change in the form of a president who can speak to the worries and hopes of today’s patients, who will seize the opportunity to bring focus and direction to issues like access, affordability, transparency and discrimination in our health system,” Richards writes. “Patient-centered care is no longer an abstract idea of the future; it is a precipitating reality necessary for the long-term sustainability of our health system and our economy.” Click here to view the article.
4. Care For Your Mind: Tony Coelho Reiterates that Patients Need to be Involved in Policy-making
PIPC Chairman Tony Coelho shares his personal experiences as a lifetime disability advocate and discusses the need to prioritize patient involvement in healthcare policy in Care For Your Mind’s discussion forum. Chairman Coelho writes, “In order to create a system that better treats patients, we need legislators and decision-makers to create laws and regulations that value and support patient input. By bringing patients to the policymaking table, we can create a stronger healthcare system that addresses the needs of the individual and ensures more effective care for everyone as we move forward.”
Chairman Coelho goes on to highlight the need for patients to remain at the center of the discussion in healthcare decision-making, to steer away from one-size-fits-all policies, and outlines a number of policies that support patient-centeredness. “The patient’s input is important at every level of care, from the exam room to Capitol Hill,” Chairman Coelho says. “Medicare and Medicaid policies often dictate how physicians and patients are able to interact; policymakers should build a similar infrastructure for patient engagement within the Centers for Medicare and Medicaid Services. Patient input at the policy level is most crucial to ensure appropriate coverage and access to care.” Click here to read the post.
5. Arthritis Foundation Blog: Patient Voice Has Strong Representation at 2016 Arthritis Industry Forum
An advocacy blog post by the Arthritis Foundation highlights the achievements of a recently held forum to discuss issues related to arthritis patient barriers to health care. The two-day event featured insightful presentations from industry experts covering topics from how employers make employee benefit decisions to the evolution of healthcare reform. Included in the forum was a presentation on the evolution of healthcare reform. Discussion focused on the importance of enhanced patient engagement and concerted efforts to ensure the patient’s voice is heard when decisions affecting healthcare policy are considered and finalized. Click here to view the blog post.
6. Cardiovascular Business: Stroke Survivors Benefit from Spending Time at Home
Cardiovascular Business highlights a recent study which found significant variation in home-time among hospitals and that certain characteristics in patients and hospitals determine how much time patients spend at home without further issues. “Examining outcomes that matter to patients is increasingly recognized as an essential component of patient-centered comparative effectiveness research,” the researchers wrote. “Prior work suggests that home-time is a highly prioritized outcome for patients.” Click here to view the study.
7. Califf: Nothing Prohibits FDA From Using Real-World Evidence In Decisions
According to Inside Health Policy, the Food and Drug Administration (FDA) will release a series of documents on its proposed real-world evidence system over the next several months, in which Commissioner Robert Califf stressed that real-world evidence and randomized clinical trials are intertwined and that nothing prohibits the use of real-world evidence data in regulatory decisions. According to Califf, “There’s nothing in current FDA regulations or guidance about the so-called evidence standard.” “Nowhere in the standard or regulations and guidances relating to it prohibit or inhibit the use of real-world evidence when real-world evidence is appropriate in the views of competent experts in the field.”
The article notes Califf’s belief that support for precision medicine and the Cancer Moonshot will lend momentum toward better collection of high-quality and real-world data and its use in regulatory decisions. It also mentions that Congress might include real-world evidence language in the 21st Century Cures Act or a user fee agreement. Click here to view the article (Paid subscription required.)
8. JAMA: AHRQ Director Sets Course for Agency's Health Services Research
Director of the Agency for Healthcare Research and Quality (AHRQ), Dr. Andrew B. Bindman, speaks with the Journal of the American Medical Association (JAMA) about fulfilling AHRQ’s mission amid the challenges of heading an agency that has been buffeted by political storms over the years. Their mission aims “to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within the U.S. Department of Health and Human Services [HHS] and with other partners to make sure that the evidence is understood and used.”
“With new entities and changes among some of the agencies, some members of Congress have had questions about the unique functions of AHRQ today,” Dr. Bindman says. “As an example, comparative effectiveness research was first developed as an idea at AHRQ, but under the Affordable Care Act, comparative effectiveness research moved to the Patient-Centered Outcomes Research Institute, so some questioned if AHRQ was still needed. But of course, comparative effectiveness research is just one element of AHRQ. Similarly, AHRQ has talked about translating research findings into practice, and the NIH has talked about ‘translational research,’ which can lead to misunderstandings about whether similar work is going on in 2 places.” Click here to view the article.
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting
October 31, 2016, 10:15AM - 5:30PM ET
Mayflower Hotel, 1127 Connecticut Ave, NW, Washington, DC 20036
Click here for details.
Cycle 3 2016 Broad PFA Applicant Town Hall
November 2, 2016, 2:30 - 4:00PM ET
Click here for details.
Strategies to Prevent Unsafe Opioid Prescribing in Primary Care PFA Applicant Town Hall
November 3, 2016, 12:00 - 1:30PM ET
Click here for details.
Getting Physicians Involved in Patient-Centered Research: Showcasing Involvement of Medical Specialty Societies in PCORI Awards
November 4, 2016, 3:00 - 4:00PM ET
Click here for details.
Health Systems and Addiction: The Use and Misuse of Legal Substances
November 16 - 17, 2016, National Academy of Sciences, Washington, DC
Click here for details.
2016 PCORI Annual Meeting
November 17 - 19, 2016, Gaylord National Resort & Convention Center, National Harbor, MD
Click here for details.
Cancer Support Community: Access to Care in Cancer 2016
November 30, 2016, 9:00AM – 12:00pm
Click here for details.
Recommendations of the Second Panel on Cost-Effectiveness in Health and Medicine
December 7, 2016, 9:00AM - 4:30PM
Click here for details.
2017 National Health Policy Conference
January 30 - 31, 2017, Marriott, Marquis, Washington D.C.
Click here for details.
10. Medical Journal Articles
Commentary: Randomized Controlled Trials Vs. Observational Studies: Why Not Just Live Together?, click here to view.
Viewpoint: Improving Benefit Design to Promote Effective, Efficient, and Affordable Care, click here to view.
Viewpoint: More Value From Payment Reform in Health Care and Biomedical Innovation, click here to view.
Viewpoint: Competencies and Tools to Shift Payments From Volume to Value, click here to view.
Incorporating Patient Perspectives in Health Technology Assessments and Clinical Practice Guidelines, click here to view.
Economic Evaluations of Pharmaceuticals Granted a Marketing Authorisation Without the Results of Randomised Trials: A Systematic Review and Taxonomy, click here to view.
A Small Group Learning Model for Evidence-Based Medicine, click here to view.
Educating Physicians in Evidence Based Medicine: Current Practices and Curricular Strategies, click here to view.
Impact of a Combined Value-Based Insurance Design and Medication Therapy Management Program on Diabetes Medication Adherence, click here to view.
11. AHRQ Effective Program Updates
Diagnosis and Treatment of Attention Deficit Hyperactivity Disorder (ADHD) in Children and Adolescents, click here to view.
Patient Safety in Ambulatory Settings -- Final Report, click here to view.
Sign and share PIPC Chairman Tony Coelho’s recently launched petition calling on health care stakeholders to recognize patients and people served by health system’s movement for greater say in their own health care. “We urge both the media and politicians to take heed of what matters to us… because in the end, we are all patients,” Chairman Coelho writes.
Join the petition to all those who define your health care to say…
- We insist that on engaging patients, caregivers, and people living with incurable diseases or lifelong disabilities in health care decision-making.
- We want to be at the center of health care.
- We want policies to explicitly empower consumers, patients and providers.
- We want to know what decisions about our health are being made by the government.
- We want a health care system that rewards the outcomes that matter to us as patients and participants in this nation’s health system.
- We reject the notion that we should be bundled into one-size-fits-all care models, or valued against one-size-fits-all judgments of cost-effectiveness. Don’t tell us what we’re worth – ask us what we value.
- None of us is average. We are unique individuals with different genetics, characteristics, needs and preferences. Especially in this promising new age of personalized medicine, we are confounded by proposals in vital programs like Medicare that aim to eliminate, rather than empower, choice of treatments.
PIPC encourages every individual to sign and share the petition in order to increase its impact and raise awareness of the important issue. Click here to view and sign the petition.
2. PCORI Annual Meeting and Patient Networking Reception
The Patient-Centered Outcomes Research Institute (PCORI) is hosting its 2016 Annual Meeting entitled Changing the Conversation about Health Research on November 16-19 at the Gaylord National Resort and Convention Center in National Harbor, Maryland. They invite patients and caregivers to join more than 1,00 members of the healthcare community to hear updates on how scientists, patients, and other stakeholders are working together to make research more useful and relevant. Among those on Thursday’s panel (November 17) include PIPC Chairman Tony Coelho who will be speaking at 1:00pm and the National Alliance on Mental Illness’ (NAMI) Andrew Sperling, a PIPC Steering member, who will be speaking on the 3:30 PCORI panel on how patient needs and values can be made central to health research and decision making. The deadline to register for the PCORI 2016 Annual Meeting is Thursday, October 27, 2016.
Click here for more information on PCORI’s Annual Meeting and to register for their event. PIPC is excited to be hosting a reception for participating patients during the annual meeting as well.
3. The Huffington Post: Why Isn’t Healthcare the Star of the 2016 Election?
In a recent Huffington Post article, Mary Richards, executive director of Partners for Better Care – a coalition aiming to make health care more cost-efficient, transparent, and fair – raises issue on the lack of debate on healthcare in the 2016 election and explains why reform is important for the next administration. Furthermore, she highlights what Partners for Better Care has done recently to advocate on the behalf of patients, including joining in signing PIPC’s open letter along with over 60 organizations calling on candidates and debate moderators to use this election to spread the word about the issues facing patients today.
“Our country needs change in the form of a president who can speak to the worries and hopes of today’s patients, who will seize the opportunity to bring focus and direction to issues like access, affordability, transparency and discrimination in our health system,” Richards writes. “Patient-centered care is no longer an abstract idea of the future; it is a precipitating reality necessary for the long-term sustainability of our health system and our economy.” Click here to view the article.
4. Care For Your Mind: Tony Coelho Reiterates that Patients Need to be Involved in Policy-making
PIPC Chairman Tony Coelho shares his personal experiences as a lifetime disability advocate and discusses the need to prioritize patient involvement in healthcare policy in Care For Your Mind’s discussion forum. Chairman Coelho writes, “In order to create a system that better treats patients, we need legislators and decision-makers to create laws and regulations that value and support patient input. By bringing patients to the policymaking table, we can create a stronger healthcare system that addresses the needs of the individual and ensures more effective care for everyone as we move forward.”
Chairman Coelho goes on to highlight the need for patients to remain at the center of the discussion in healthcare decision-making, to steer away from one-size-fits-all policies, and outlines a number of policies that support patient-centeredness. “The patient’s input is important at every level of care, from the exam room to Capitol Hill,” Chairman Coelho says. “Medicare and Medicaid policies often dictate how physicians and patients are able to interact; policymakers should build a similar infrastructure for patient engagement within the Centers for Medicare and Medicaid Services. Patient input at the policy level is most crucial to ensure appropriate coverage and access to care.” Click here to read the post.
5. Arthritis Foundation Blog: Patient Voice Has Strong Representation at 2016 Arthritis Industry Forum
An advocacy blog post by the Arthritis Foundation highlights the achievements of a recently held forum to discuss issues related to arthritis patient barriers to health care. The two-day event featured insightful presentations from industry experts covering topics from how employers make employee benefit decisions to the evolution of healthcare reform. Included in the forum was a presentation on the evolution of healthcare reform. Discussion focused on the importance of enhanced patient engagement and concerted efforts to ensure the patient’s voice is heard when decisions affecting healthcare policy are considered and finalized. Click here to view the blog post.
6. Cardiovascular Business: Stroke Survivors Benefit from Spending Time at Home
Cardiovascular Business highlights a recent study which found significant variation in home-time among hospitals and that certain characteristics in patients and hospitals determine how much time patients spend at home without further issues. “Examining outcomes that matter to patients is increasingly recognized as an essential component of patient-centered comparative effectiveness research,” the researchers wrote. “Prior work suggests that home-time is a highly prioritized outcome for patients.” Click here to view the study.
7. Califf: Nothing Prohibits FDA From Using Real-World Evidence In Decisions
According to Inside Health Policy, the Food and Drug Administration (FDA) will release a series of documents on its proposed real-world evidence system over the next several months, in which Commissioner Robert Califf stressed that real-world evidence and randomized clinical trials are intertwined and that nothing prohibits the use of real-world evidence data in regulatory decisions. According to Califf, “There’s nothing in current FDA regulations or guidance about the so-called evidence standard.” “Nowhere in the standard or regulations and guidances relating to it prohibit or inhibit the use of real-world evidence when real-world evidence is appropriate in the views of competent experts in the field.”
The article notes Califf’s belief that support for precision medicine and the Cancer Moonshot will lend momentum toward better collection of high-quality and real-world data and its use in regulatory decisions. It also mentions that Congress might include real-world evidence language in the 21st Century Cures Act or a user fee agreement. Click here to view the article (Paid subscription required.)
8. JAMA: AHRQ Director Sets Course for Agency's Health Services Research
Director of the Agency for Healthcare Research and Quality (AHRQ), Dr. Andrew B. Bindman, speaks with the Journal of the American Medical Association (JAMA) about fulfilling AHRQ’s mission amid the challenges of heading an agency that has been buffeted by political storms over the years. Their mission aims “to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable, and to work within the U.S. Department of Health and Human Services [HHS] and with other partners to make sure that the evidence is understood and used.”
“With new entities and changes among some of the agencies, some members of Congress have had questions about the unique functions of AHRQ today,” Dr. Bindman says. “As an example, comparative effectiveness research was first developed as an idea at AHRQ, but under the Affordable Care Act, comparative effectiveness research moved to the Patient-Centered Outcomes Research Institute, so some questioned if AHRQ was still needed. But of course, comparative effectiveness research is just one element of AHRQ. Similarly, AHRQ has talked about translating research findings into practice, and the NIH has talked about ‘translational research,’ which can lead to misunderstandings about whether similar work is going on in 2 places.” Click here to view the article.
9. Upcoming Events and Webinars
PCORI Board of Governors Meeting
October 31, 2016, 10:15AM - 5:30PM ET
Mayflower Hotel, 1127 Connecticut Ave, NW, Washington, DC 20036
Click here for details.
Cycle 3 2016 Broad PFA Applicant Town Hall
November 2, 2016, 2:30 - 4:00PM ET
Click here for details.
Strategies to Prevent Unsafe Opioid Prescribing in Primary Care PFA Applicant Town Hall
November 3, 2016, 12:00 - 1:30PM ET
Click here for details.
Getting Physicians Involved in Patient-Centered Research: Showcasing Involvement of Medical Specialty Societies in PCORI Awards
November 4, 2016, 3:00 - 4:00PM ET
Click here for details.
Health Systems and Addiction: The Use and Misuse of Legal Substances
November 16 - 17, 2016, National Academy of Sciences, Washington, DC
Click here for details.
2016 PCORI Annual Meeting
November 17 - 19, 2016, Gaylord National Resort & Convention Center, National Harbor, MD
Click here for details.
Cancer Support Community: Access to Care in Cancer 2016
November 30, 2016, 9:00AM – 12:00pm
Click here for details.
Recommendations of the Second Panel on Cost-Effectiveness in Health and Medicine
December 7, 2016, 9:00AM - 4:30PM
Click here for details.
2017 National Health Policy Conference
January 30 - 31, 2017, Marriott, Marquis, Washington D.C.
Click here for details.
10. Medical Journal Articles
Commentary: Randomized Controlled Trials Vs. Observational Studies: Why Not Just Live Together?, click here to view.
Viewpoint: Improving Benefit Design to Promote Effective, Efficient, and Affordable Care, click here to view.
Viewpoint: More Value From Payment Reform in Health Care and Biomedical Innovation, click here to view.
Viewpoint: Competencies and Tools to Shift Payments From Volume to Value, click here to view.
Incorporating Patient Perspectives in Health Technology Assessments and Clinical Practice Guidelines, click here to view.
Economic Evaluations of Pharmaceuticals Granted a Marketing Authorisation Without the Results of Randomised Trials: A Systematic Review and Taxonomy, click here to view.
A Small Group Learning Model for Evidence-Based Medicine, click here to view.
Educating Physicians in Evidence Based Medicine: Current Practices and Curricular Strategies, click here to view.
Impact of a Combined Value-Based Insurance Design and Medication Therapy Management Program on Diabetes Medication Adherence, click here to view.
11. AHRQ Effective Program Updates
Diagnosis and Treatment of Attention Deficit Hyperactivity Disorder (ADHD) in Children and Adolescents, click here to view.
Patient Safety in Ambulatory Settings -- Final Report, click here to view.
