In This Week’s Issue:
1. PCORI Blog: Former PEAP Member Becomes a PCORI Engagement Officer, click hereto view the post.
2. Alliance for Aging Research: CER for More Patient-Centered Care, click here for the editorial.
3. Clinical Therapeutics: Role of PCORI in Addressing Disparities and Engaging Patients in Clinical Research, click here for the post.
4. Medscape: The Misnomer of Low-Value Care, click here for the article (subscription required).
5. Clinical Therapeutics: Informing Drug Development and Clinical Practice Through Patient-Centered Outcomes Research, click here for the article.
6. Modern Healthcare: High Drug Costs May Lead to Price Controls, AHIP's Ignagni Says, click here for the article (subscription required).
7. NEHI: An Evolving Landscape: Comparative Effectiveness Research, Outcomes Research and Health Care Innovation, click here to view the brief.
8. PLOS Medicine: The Role of Open Access in Reducing Waste in Medical Research, clickhere for the article.
1. PCORI Blog: Former PEAP Member Becomes a PCORI Engagement Officer, click hereto view the post.
2. Alliance for Aging Research: CER for More Patient-Centered Care, click here for the editorial.
3. Clinical Therapeutics: Role of PCORI in Addressing Disparities and Engaging Patients in Clinical Research, click here for the post.
4. Medscape: The Misnomer of Low-Value Care, click here for the article (subscription required).
5. Clinical Therapeutics: Informing Drug Development and Clinical Practice Through Patient-Centered Outcomes Research, click here for the article.
6. Modern Healthcare: High Drug Costs May Lead to Price Controls, AHIP's Ignagni Says, click here for the article (subscription required).
7. NEHI: An Evolving Landscape: Comparative Effectiveness Research, Outcomes Research and Health Care Innovation, click here to view the brief.
8. PLOS Medicine: The Role of Open Access in Reducing Waste in Medical Research, clickhere for the article.
1. PCORI Blog: Former PEAP Member Becomes a PCORI Engagement Officer
PIPC congratulates Kimberly Bailey on her appointment as PCORI’s first Engagement Officer. Ms. Bailey came from Families USA, and served with PIPC’s Executive Director on the PCORI Patient Engagement Advisory Panel. In a post last week on The PCORI Blog, Susan Sheridan, Suzanne Schrandt, Susan Hildebrandt, and Jean Slutsky announced that they have “named Kimberly Bailey, MS, as PCORI's first Engagement Officer. […] In that role, Bailey will assist our Engagement and Science programs as they actively manage our portfolio of research projects. She will focus specifically on the engagement of patients and other healthcare stakeholders in each project. […] The concept of Engagement Officers arose as we worked with our Advisory Panel on Patient Engagement to create the Patient and Family Engagement Rubric, which also relates to the participation of other healthcare stakeholders in research projects. […] We view the Engagement Officer’s role as a bridge between science and engagement program staff. We believe that engagement, applied from a study’s start to finish, not only advances relevant science but also will help to speed the progression of findings into practice.” Click here to view the post.
2. Alliance for Aging Research: CER for More Patient-Centered Care
Recently, Cynthia Bens of the Alliance for Aging Research commented on a study that examined comparative effectiveness research (CER) on a national scale. “The National Pharmaceutical Council (NPC) just released a report that is worth reading that reflects the views of researchers, government officials, payers and health care associations on comparative effectiveness research (CER) and its potential impact on health care decision-making. The report tells us that CER remains an important issue for these stakeholders and that they believe that this research will not only have an impact on patient-provider treatment choice, but also influence health care payment and delivery in the near future. […] Insights from publications like these will help elevate the dialogue on how to shape the health care system to meet the needs of an aging nation.” Click here to view the editorial.
3. Clinical Therapeutics: Role of PCORI in Addressing Disparities and Engaging Patients in Clinical Research
Clinical Therapeutics published a post last week by PCORI’s Romana Hasnain-Wynia and Anne C. Beal. In it they comment, “PCORI is actively investing in efforts to facilitate engagement at all levels of the research enterprise through its advisory panels, workshops, roundtables, merit review processes, and integration of patients and other important stakeholders throughout the conduct of the research itself, with particular attention to ensuring the inclusion of underserved patient populations in those efforts. Furthermore, PCORI maintains a focus on including heterogeneous patient populations in data collection to ensure that the research they support is able to include subpopulation analyses, whether it targets the elderly or racial and ethnic minorities.” Click here for the post.
4. Medscape: The Misnomer of Low-Value Care
There has been much discussion about the benefits of value-based clinical decisions that examine treatments which have worked for the majority of patients, but Dr. Seth Bilazarian asked in a recent Medscape article, “Whose values are being considered when it's considered low-value care? When we talk about low-value care, we're really talking about a comparative of effectiveness, not comparative effectiveness leading to some kind of good outcome. We're currently instructed, or highly recommended, to use shared decision-making to include patients' values. Patients' values may include anxiety about a diagnosis, so undergoing a procedure may be part of a patient's value system and is a really very high value. To label it as ‘low value’ creates a real problem for our discussions with patients.” Click here for the article (subscription required).
5. Clinical Therapeutics: Informing Drug Development and Clinical Practice Through Patient-Centered Outcomes Research
Recently, Cheryl D. Coon and Denys T. Lau commented in Clinical Therapeutics, “[a]lthough [patient-reported outcome (PRO)] instruments have been used for years, especially in the field of psychology research, they have gained favor over time as a means for diagnosing medical conditions, assessing treatment efficacy, understanding the burden of illness, and gaining insight into the impact of disease directly from the patient's own perspective. The concept of patient-centered outcomes allows for health care research to go beyond its traditional model, with a focus on the impact of disease and treatment on a patient's quality of life from his or her own eyes.” Click here for the article.
6. Modern Healthcare: High Drug Costs May Lead to Price Controls, AHIP's Ignagni Says
Modern Healthcare published a report by Paul Demko regarding the cost of some new “wonder drugs.” “[Karen Ignagni, president and CEO of AHIP] suggested taking a look at how much of drug company spending goes for research and how much for other areas such as marketing. She also said the government might require comparative-effectiveness research to help determine how much a drug therapy is really worth.” Click here for the article. (subscription required)
7. NEHI: An Evolving Landscape: Comparative Effectiveness Research, Outcomes Research and Health Care Innovation
In this issue brief, the Network for Excellence in Health Innovation (NEHI) details the dilemma for health care innovators as the volume of data raises more questions than it answers. NEHI says big data offers the promise of big changes in health care, but hurdles remain. “Changes in standards of evidence pose a unique challenge to innovator biomedical companies. Companies face long lead times for development of products and when standards of evidence change while development and approval is still in process unanticipated delays and costs may ensue. “Downstream” changes in standards, such as changes in the standards of regulators or even the standards of payers and providers further downstream, can create uncertainty that will slow or freeze up further development and research of new products.” Click here for the full article.
8. PLOS Medicine: The Role of Open Access in Reducing Waste in Medical Research
Last week, Paul Glasziou commented in PLOS Medicine, “Twenty years ago an editorial by Doug Altman in the BMJ […] decried the poor design and reporting of research, stating that ‘huge sums of money are spent annually on research that is seriously flawed through the use of inappropriate designs, unrepresentative samples, small samples, incorrect methods of analysis, and faulty interpretation.’ Since then, change has been gradual, while the list of problems has lengthened, and documentation of their magnitude has accumulated. […] The estimate that 85% of research is wasted referred only to activities prior to the point of publication. Much waste clearly occurs after publication: from poor access, poor dissemination, and poor uptake of the findings of research. The development of open access to research is important to reduce this post-publication waste.” Click here for the article.
PIPC congratulates Kimberly Bailey on her appointment as PCORI’s first Engagement Officer. Ms. Bailey came from Families USA, and served with PIPC’s Executive Director on the PCORI Patient Engagement Advisory Panel. In a post last week on The PCORI Blog, Susan Sheridan, Suzanne Schrandt, Susan Hildebrandt, and Jean Slutsky announced that they have “named Kimberly Bailey, MS, as PCORI's first Engagement Officer. […] In that role, Bailey will assist our Engagement and Science programs as they actively manage our portfolio of research projects. She will focus specifically on the engagement of patients and other healthcare stakeholders in each project. […] The concept of Engagement Officers arose as we worked with our Advisory Panel on Patient Engagement to create the Patient and Family Engagement Rubric, which also relates to the participation of other healthcare stakeholders in research projects. […] We view the Engagement Officer’s role as a bridge between science and engagement program staff. We believe that engagement, applied from a study’s start to finish, not only advances relevant science but also will help to speed the progression of findings into practice.” Click here to view the post.
2. Alliance for Aging Research: CER for More Patient-Centered Care
Recently, Cynthia Bens of the Alliance for Aging Research commented on a study that examined comparative effectiveness research (CER) on a national scale. “The National Pharmaceutical Council (NPC) just released a report that is worth reading that reflects the views of researchers, government officials, payers and health care associations on comparative effectiveness research (CER) and its potential impact on health care decision-making. The report tells us that CER remains an important issue for these stakeholders and that they believe that this research will not only have an impact on patient-provider treatment choice, but also influence health care payment and delivery in the near future. […] Insights from publications like these will help elevate the dialogue on how to shape the health care system to meet the needs of an aging nation.” Click here to view the editorial.
3. Clinical Therapeutics: Role of PCORI in Addressing Disparities and Engaging Patients in Clinical Research
Clinical Therapeutics published a post last week by PCORI’s Romana Hasnain-Wynia and Anne C. Beal. In it they comment, “PCORI is actively investing in efforts to facilitate engagement at all levels of the research enterprise through its advisory panels, workshops, roundtables, merit review processes, and integration of patients and other important stakeholders throughout the conduct of the research itself, with particular attention to ensuring the inclusion of underserved patient populations in those efforts. Furthermore, PCORI maintains a focus on including heterogeneous patient populations in data collection to ensure that the research they support is able to include subpopulation analyses, whether it targets the elderly or racial and ethnic minorities.” Click here for the post.
4. Medscape: The Misnomer of Low-Value Care
There has been much discussion about the benefits of value-based clinical decisions that examine treatments which have worked for the majority of patients, but Dr. Seth Bilazarian asked in a recent Medscape article, “Whose values are being considered when it's considered low-value care? When we talk about low-value care, we're really talking about a comparative of effectiveness, not comparative effectiveness leading to some kind of good outcome. We're currently instructed, or highly recommended, to use shared decision-making to include patients' values. Patients' values may include anxiety about a diagnosis, so undergoing a procedure may be part of a patient's value system and is a really very high value. To label it as ‘low value’ creates a real problem for our discussions with patients.” Click here for the article (subscription required).
5. Clinical Therapeutics: Informing Drug Development and Clinical Practice Through Patient-Centered Outcomes Research
Recently, Cheryl D. Coon and Denys T. Lau commented in Clinical Therapeutics, “[a]lthough [patient-reported outcome (PRO)] instruments have been used for years, especially in the field of psychology research, they have gained favor over time as a means for diagnosing medical conditions, assessing treatment efficacy, understanding the burden of illness, and gaining insight into the impact of disease directly from the patient's own perspective. The concept of patient-centered outcomes allows for health care research to go beyond its traditional model, with a focus on the impact of disease and treatment on a patient's quality of life from his or her own eyes.” Click here for the article.
6. Modern Healthcare: High Drug Costs May Lead to Price Controls, AHIP's Ignagni Says
Modern Healthcare published a report by Paul Demko regarding the cost of some new “wonder drugs.” “[Karen Ignagni, president and CEO of AHIP] suggested taking a look at how much of drug company spending goes for research and how much for other areas such as marketing. She also said the government might require comparative-effectiveness research to help determine how much a drug therapy is really worth.” Click here for the article. (subscription required)
7. NEHI: An Evolving Landscape: Comparative Effectiveness Research, Outcomes Research and Health Care Innovation
In this issue brief, the Network for Excellence in Health Innovation (NEHI) details the dilemma for health care innovators as the volume of data raises more questions than it answers. NEHI says big data offers the promise of big changes in health care, but hurdles remain. “Changes in standards of evidence pose a unique challenge to innovator biomedical companies. Companies face long lead times for development of products and when standards of evidence change while development and approval is still in process unanticipated delays and costs may ensue. “Downstream” changes in standards, such as changes in the standards of regulators or even the standards of payers and providers further downstream, can create uncertainty that will slow or freeze up further development and research of new products.” Click here for the full article.
8. PLOS Medicine: The Role of Open Access in Reducing Waste in Medical Research
Last week, Paul Glasziou commented in PLOS Medicine, “Twenty years ago an editorial by Doug Altman in the BMJ […] decried the poor design and reporting of research, stating that ‘huge sums of money are spent annually on research that is seriously flawed through the use of inappropriate designs, unrepresentative samples, small samples, incorrect methods of analysis, and faulty interpretation.’ Since then, change has been gradual, while the list of problems has lengthened, and documentation of their magnitude has accumulated. […] The estimate that 85% of research is wasted referred only to activities prior to the point of publication. Much waste clearly occurs after publication: from poor access, poor dissemination, and poor uptake of the findings of research. The development of open access to research is important to reduce this post-publication waste.” Click here for the article.
