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 Cancer Moonshot: It’s Time to Engage Patients on Innovation, click here to view the op-ed.
4. Care For Your Mind: Decision Aids Can Be Developed to Successfully Support Shared Decision Making in Clinical Encounters, click here to view the article.
5. ICER Report Finalized and Available to the Public, Lung Cancer Alliance Responds, click here to view the report and click here to view the response.
6. Video: Dr Andrew L. Pecora Outlines Issues Oncologists Have With Value Frameworks, click here to view the video.
7. Video: Dr Eleanor Perfetto Discusses Importance of Including Patients in Value Discussion, click here to view the video.
8. PCORI Blog: Faster Ways to Get Actionable Evidence to Stakeholders, click here to view the blog post.
9. Healthcare Informatics: PCORnet Releases Data on Demographics, Conditions of Interest, click here to view the article.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. 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 Cancer Moonshot: It’s Time to Engage Patients on Innovation, click here to view the op-ed.
4. Care For Your Mind: Decision Aids Can Be Developed to Successfully Support Shared Decision Making in Clinical Encounters, click here to view the article.
5. ICER Report Finalized and Available to the Public, Lung Cancer Alliance Responds, click here to view the report and click here to view the response.
6. Video: Dr Andrew L. Pecora Outlines Issues Oncologists Have With Value Frameworks, click here to view the video.
7. Video: Dr Eleanor Perfetto Discusses Importance of Including Patients in Value Discussion, click here to view the video.
8. PCORI Blog: Faster Ways to Get Actionable Evidence to Stakeholders, click here to view the blog post.
9. Healthcare Informatics: PCORnet Releases Data on Demographics, Conditions of Interest, click here to view the article.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. 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 Cancer Moonshot: It’s Time to Engage Patients on Innovation
In an op-ed published in Morning Consult, co-conveners of the Turning the Tide Against Cancer initiative, which works with members of the cancer community to identify policies that sustain medical innovation while addressing the issue of rising health care costs, outline a number of suggestions for policy makers to consider that take patients’ perspectives into account in its efforts to curb cancer. The suggestions include accelerating bringing new therapies to patients and improving patient access to care.
“What we have consistently discovered is that any effort to pursue progress against cancer on behalf of patients must take into consideration the preferences, priorities, and needs of one group — patients,” the authors write. “We need policies that support patient-centered care, reimburse for evidence-based molecular diagnostics, sustain the development and utilization of personalized medicines, support informed patient decision-making and align with value-driven healthcare. Clinically significant enhancements of survival and quality of life are essential for value-based reimbursement to occur. Efforts that impose one-size-fits-all coverage standards or make blunt payment cuts to achieve cost containment will ultimately conflict with personalized medicine innovations and the goals of the Moonshot initiative.” Click here to view the op-ed.
4. Care For Your Mind: Decision Aids Can Be Developed to Successfully Support Shared Decision Making in Clinical Encounters
In a recent article posted in Care For Your Mind, Drs. Juan P. Brito Campana, M.D, MSc. and Annie LeBlanc, Ph.D. of the Mayo Clinic Knowledge and Evaluation Research Unit (KER) stress the need for doctors to be given tools that allow them to communicate effectively and engage in meaningful conversations about their patients’ preferences, needs, and values – i.e. decision aids that support the practice of shared decision making (SDM).
Notably, the article addresses concerns by those who argue that using decision aids and SDM can lead to patients choosing more expensive treatment options, thereby putting more stress on the healthcare system. The authors note that others have put forward the opposite argument – that SDM can reduce utilization of expensive options and overall cost. “SDM, however, allows for cost to be a part of the conversation,” they write. “Doctors and patients can discuss the risks, preferences, benefits, and costs as part of the process.” The authors go on to state, “That being said, it’s important to note that it’s not the doctor’s job to make sure the patient chooses the cheapest care — it’s his or her job to make sure the patient gets the best care, the care that addresses their situation in an evidence-based manner that reflects their values and informed preferences. Policymakers are responsible for addressing cost concerns and the larger needs of society.” Click here to view the article.
5. ICER Report Finalized and Available to the Public; Lung Cancer Alliance Responds
The Institute for Clinical and Economic Review (ICER) released a Final Evidence Report and Meeting Summary last week on the comparative clinical effectiveness and value of PD-1 immunotherapies and tyrosine kinase inhibitors (TKIs) for treatment of advanced non-small cell lung cancer (NSCLC). The report incorporates a summary of evidence votes taken during a public meeting of the Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC), as well as key policy implications stemming from discussion with a panel of patients, clinical experts, and a major insurer.
Lung Cancer Alliance quickly responded to the report. “We appreciate that the intent of ICER’s work is to stimulate productive conversation between all stakeholders to find solutions that will help as many patients as possible benefit from treatments without ‘breaking the bank’. And we agree with ICER that we must continue to strive for a more efficient and effective health care delivery system that is valued by people,” they wrote. “Yet we must ensure that in a rush to offer recommendations to advance improvements that we don’t set back current momentum driving us toward more individualize, precise and targeted treatment strategies that uniquely address a patient’s care needs. The ‘art of medicine’ is best left in the hands of doctors and patient who will know best what therapies – or combination of therapies – are valued most to them.” Click here to view the report and click here to view the response.
6. Video: Dr Andrew L. Pecora Outlines Issues Oncologists Have With Value Frameworks
In a video post by the American Journal of Managed Care, Dr. Andrew L. Pecora, chief innovation officer professor and vice president of cancer services at the John Theurer Cancer Center outlines the issues oncologists have with value frameworks. In answering how important he feels value frameworks like the ones put out by the American Society of Clinical Oncology, the National Comprehensive Cancer Network, and the Institute for Clinical and Economic Review are, Dr. Pecora says, “The problem I think most oncologists have with the current value-based frameworks is they are sort of indirect arbiters of value, value being clinical outcome divided by total cost of care. We’re still going to get to the point where we can measure direct variables, the direct outcomes that should go into value like overall survival, progression-free survival, time to best response, incidence and severity of toxicity.”
Dr. Pecora goes on to say, “When a patient has cancer and they come to a cancer doctor, they’re not thinking about value, they’re thinking about living, surviving, overcoming this thing that could prematurely end their life. And that’s a complex problem, too, because a part of the time it can be dealt with immediately with a surgical procedure and you’re done. Sometimes you need a surgical procedure or maybe you don’t, but you can get medicines that can cure you. And then many times, regardless of a surgical procedure, there’s nothing that can cure you but there’s things that can keep you alive longer. So those are all different scenarios where the value equation, the actual things we measure are different.” Click here to view the video.
7. Video: Dr. Eleanor Perfetto Discusses Importance of Including Patients in Value Discussion
In an American Journal of Managed Care video, Dr. Eleanor Perfetto, senior vice president of strategic initiatives for the National Health Council, discusses the importance of including patients in value discussion, noting that patient input is especially important when the conversation results in a decision that could affect access to care. When asked why she thinks it is difficult to determine value and what tools are available to help, Dr. Perfetto says, “Now value is a word that’s really hard to define, I think we all have an idea in our mind what we think value means, but when you’re asked to give a definition of ‘what is value in healthcare?’ it’s really hard to pinpoint.” “I think that’s one of the things we’re struggling about this year with so much discussion about value. We need to make sure that we’re all on the same page with our definition, and we haven’t gotten there yet.”
Dr. Perfetto goes on to say, “For patients, what’s really important is that when there’s a discussion going on about value, and what’s value in healthcare, and that discussion produces a decision that could mean access or lack of access to the patient community, patients want to be involved in that discussion. They want to be at the table. They want to really know that their voice has been heard in what they consider to be value. The definition of value can be different for every disease and condition, and so that patient voice is really important.” Click here to view the video.
8. PCORI Blog: Faster Ways to Get Actionable Evidence to Stakeholders
A recent Patient-Centered Outcomes Research Institute (PCORI) blog post highlights the agency’s new initiative – the Evidence Synthesis Initiative – which will take a careful look at results and data from already-completed research studies that can more quickly provide reliable findings that patients and those who care for them can use. The blog post notes that the program will include rigorous reviews of the best evidence available on topics of critical concern to patients and other healthcare stakeholders. The goal is to synthesize all relevant completed studies on a particular clinical question in order to provide evidence that is stronger and more certain than the results of each individual study, the post says. Under this initiative, PCORI will also fund projects that reanalyze data from already-completed studies to discover which specific groups of patients gain the most or least benefit, or, conversely, are at greater risk for harms from an intervention. And once PCORI has synthesized the evidence, the blog says, they will disseminate it through products designed to meet the needs of their various stakeholders.
“This initiative is the latest that we at PCORI have undertaken as part of our mission to make authoritative, relevant, useful information from comparative clinical effectiveness research (CER) available to help patients and those who care for them make better-informed healthcare decisions,” the blog post states. “It complements the hundreds of patient-centered research studies we’ve funded comparing how well different care options work, and for whom, given patients’ needs, circumstances, and preferences.” Click here to view the blog post.
9. Healthcare Informatics: PCORnet Releases Data on Demographics, Conditions of Interest
Last week, the national Patient-Centered Clinical Research Network (PCORnet) released early data on its patient demographics and conditions of interest. In the recently released progress report, PCORnet said that as early as spring 2017, researchers would be able to partner with them to query health records and other data from millions of individuals represented in PCORnet’s Common Data Model. “The enthusiasm for PCORnet underscores the pressing need for a national evidence generation system that puts the interests of people and healthcare stakeholders at the forefront,” says Adrian Hernandez, M.D., M.H.S., co-principal investigator of the PCORnet Coordinating Center. “Today’s public announcement of our initial network demographics and conditions is an important milestone that puts us one step closer to our goal of facilitating timely, meaningful answers to people’s everyday health questions.” Click here to view the article.
10. Upcoming Events and Webinars
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.
11. Medical Journal Articles
Enrolling African-American and Latino Patients with Asthma in Comparative Effectiveness Research: Lessons Learned From Eight Patient-Centered Studies, click here to view.
Medication Adherence and Healthcare Disparities: Impact of Statin Co-Payment Reduction, click here to view.
12. 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 Cancer Moonshot: It’s Time to Engage Patients on Innovation
In an op-ed published in Morning Consult, co-conveners of the Turning the Tide Against Cancer initiative, which works with members of the cancer community to identify policies that sustain medical innovation while addressing the issue of rising health care costs, outline a number of suggestions for policy makers to consider that take patients’ perspectives into account in its efforts to curb cancer. The suggestions include accelerating bringing new therapies to patients and improving patient access to care.
“What we have consistently discovered is that any effort to pursue progress against cancer on behalf of patients must take into consideration the preferences, priorities, and needs of one group — patients,” the authors write. “We need policies that support patient-centered care, reimburse for evidence-based molecular diagnostics, sustain the development and utilization of personalized medicines, support informed patient decision-making and align with value-driven healthcare. Clinically significant enhancements of survival and quality of life are essential for value-based reimbursement to occur. Efforts that impose one-size-fits-all coverage standards or make blunt payment cuts to achieve cost containment will ultimately conflict with personalized medicine innovations and the goals of the Moonshot initiative.” Click here to view the op-ed.
4. Care For Your Mind: Decision Aids Can Be Developed to Successfully Support Shared Decision Making in Clinical Encounters
In a recent article posted in Care For Your Mind, Drs. Juan P. Brito Campana, M.D, MSc. and Annie LeBlanc, Ph.D. of the Mayo Clinic Knowledge and Evaluation Research Unit (KER) stress the need for doctors to be given tools that allow them to communicate effectively and engage in meaningful conversations about their patients’ preferences, needs, and values – i.e. decision aids that support the practice of shared decision making (SDM).
Notably, the article addresses concerns by those who argue that using decision aids and SDM can lead to patients choosing more expensive treatment options, thereby putting more stress on the healthcare system. The authors note that others have put forward the opposite argument – that SDM can reduce utilization of expensive options and overall cost. “SDM, however, allows for cost to be a part of the conversation,” they write. “Doctors and patients can discuss the risks, preferences, benefits, and costs as part of the process.” The authors go on to state, “That being said, it’s important to note that it’s not the doctor’s job to make sure the patient chooses the cheapest care — it’s his or her job to make sure the patient gets the best care, the care that addresses their situation in an evidence-based manner that reflects their values and informed preferences. Policymakers are responsible for addressing cost concerns and the larger needs of society.” Click here to view the article.
5. ICER Report Finalized and Available to the Public; Lung Cancer Alliance Responds
The Institute for Clinical and Economic Review (ICER) released a Final Evidence Report and Meeting Summary last week on the comparative clinical effectiveness and value of PD-1 immunotherapies and tyrosine kinase inhibitors (TKIs) for treatment of advanced non-small cell lung cancer (NSCLC). The report incorporates a summary of evidence votes taken during a public meeting of the Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC), as well as key policy implications stemming from discussion with a panel of patients, clinical experts, and a major insurer.
Lung Cancer Alliance quickly responded to the report. “We appreciate that the intent of ICER’s work is to stimulate productive conversation between all stakeholders to find solutions that will help as many patients as possible benefit from treatments without ‘breaking the bank’. And we agree with ICER that we must continue to strive for a more efficient and effective health care delivery system that is valued by people,” they wrote. “Yet we must ensure that in a rush to offer recommendations to advance improvements that we don’t set back current momentum driving us toward more individualize, precise and targeted treatment strategies that uniquely address a patient’s care needs. The ‘art of medicine’ is best left in the hands of doctors and patient who will know best what therapies – or combination of therapies – are valued most to them.” Click here to view the report and click here to view the response.
6. Video: Dr Andrew L. Pecora Outlines Issues Oncologists Have With Value Frameworks
In a video post by the American Journal of Managed Care, Dr. Andrew L. Pecora, chief innovation officer professor and vice president of cancer services at the John Theurer Cancer Center outlines the issues oncologists have with value frameworks. In answering how important he feels value frameworks like the ones put out by the American Society of Clinical Oncology, the National Comprehensive Cancer Network, and the Institute for Clinical and Economic Review are, Dr. Pecora says, “The problem I think most oncologists have with the current value-based frameworks is they are sort of indirect arbiters of value, value being clinical outcome divided by total cost of care. We’re still going to get to the point where we can measure direct variables, the direct outcomes that should go into value like overall survival, progression-free survival, time to best response, incidence and severity of toxicity.”
Dr. Pecora goes on to say, “When a patient has cancer and they come to a cancer doctor, they’re not thinking about value, they’re thinking about living, surviving, overcoming this thing that could prematurely end their life. And that’s a complex problem, too, because a part of the time it can be dealt with immediately with a surgical procedure and you’re done. Sometimes you need a surgical procedure or maybe you don’t, but you can get medicines that can cure you. And then many times, regardless of a surgical procedure, there’s nothing that can cure you but there’s things that can keep you alive longer. So those are all different scenarios where the value equation, the actual things we measure are different.” Click here to view the video.
7. Video: Dr. Eleanor Perfetto Discusses Importance of Including Patients in Value Discussion
In an American Journal of Managed Care video, Dr. Eleanor Perfetto, senior vice president of strategic initiatives for the National Health Council, discusses the importance of including patients in value discussion, noting that patient input is especially important when the conversation results in a decision that could affect access to care. When asked why she thinks it is difficult to determine value and what tools are available to help, Dr. Perfetto says, “Now value is a word that’s really hard to define, I think we all have an idea in our mind what we think value means, but when you’re asked to give a definition of ‘what is value in healthcare?’ it’s really hard to pinpoint.” “I think that’s one of the things we’re struggling about this year with so much discussion about value. We need to make sure that we’re all on the same page with our definition, and we haven’t gotten there yet.”
Dr. Perfetto goes on to say, “For patients, what’s really important is that when there’s a discussion going on about value, and what’s value in healthcare, and that discussion produces a decision that could mean access or lack of access to the patient community, patients want to be involved in that discussion. They want to be at the table. They want to really know that their voice has been heard in what they consider to be value. The definition of value can be different for every disease and condition, and so that patient voice is really important.” Click here to view the video.
8. PCORI Blog: Faster Ways to Get Actionable Evidence to Stakeholders
A recent Patient-Centered Outcomes Research Institute (PCORI) blog post highlights the agency’s new initiative – the Evidence Synthesis Initiative – which will take a careful look at results and data from already-completed research studies that can more quickly provide reliable findings that patients and those who care for them can use. The blog post notes that the program will include rigorous reviews of the best evidence available on topics of critical concern to patients and other healthcare stakeholders. The goal is to synthesize all relevant completed studies on a particular clinical question in order to provide evidence that is stronger and more certain than the results of each individual study, the post says. Under this initiative, PCORI will also fund projects that reanalyze data from already-completed studies to discover which specific groups of patients gain the most or least benefit, or, conversely, are at greater risk for harms from an intervention. And once PCORI has synthesized the evidence, the blog says, they will disseminate it through products designed to meet the needs of their various stakeholders.
“This initiative is the latest that we at PCORI have undertaken as part of our mission to make authoritative, relevant, useful information from comparative clinical effectiveness research (CER) available to help patients and those who care for them make better-informed healthcare decisions,” the blog post states. “It complements the hundreds of patient-centered research studies we’ve funded comparing how well different care options work, and for whom, given patients’ needs, circumstances, and preferences.” Click here to view the blog post.
9. Healthcare Informatics: PCORnet Releases Data on Demographics, Conditions of Interest
Last week, the national Patient-Centered Clinical Research Network (PCORnet) released early data on its patient demographics and conditions of interest. In the recently released progress report, PCORnet said that as early as spring 2017, researchers would be able to partner with them to query health records and other data from millions of individuals represented in PCORnet’s Common Data Model. “The enthusiasm for PCORnet underscores the pressing need for a national evidence generation system that puts the interests of people and healthcare stakeholders at the forefront,” says Adrian Hernandez, M.D., M.H.S., co-principal investigator of the PCORnet Coordinating Center. “Today’s public announcement of our initial network demographics and conditions is an important milestone that puts us one step closer to our goal of facilitating timely, meaningful answers to people’s everyday health questions.” Click here to view the article.
10. Upcoming Events and Webinars
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.
11. Medical Journal Articles
Enrolling African-American and Latino Patients with Asthma in Comparative Effectiveness Research: Lessons Learned From Eight Patient-Centered Studies, click here to view.
Medication Adherence and Healthcare Disparities: Impact of Statin Co-Payment Reduction, click here to view.
12. 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.
