In This Week’s Issue:
1. Save the Date: PIPC’s Patient Empowerment Webinar on January 20, RSVP to [email protected]<script cf-hash='f9e31' type="text/javascript"> /* */</script>.
2. PIPC Comments on PCORI Dissemination and Implementation Action Plan, click here to view.
3. Journal Summarizes Lessons of Early Comparative Effectiveness Research, click here to view the paper
4. PCORI Offers Up to $150.7 Million to Support Second Phase of Development of PCORnet, click here to view the press release.
5. Forbes: Big Data Smoothes Out The Business Of Government, click here to view the full article.
6. ProHealth: 10 Important Advances in ME/CFS, click here to view the article.
7. U.S. Chamber of Commerce Foundation: Real World Data – The Challenge That Can't Be Refused, click here to view the article.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. Save the Date: PIPC’s Patient Empowerment Webinar on January 20, RSVP to [email protected]<script cf-hash='f9e31' type="text/javascript"> /* */</script>.
2. PIPC Comments on PCORI Dissemination and Implementation Action Plan, click here to view.
3. Journal Summarizes Lessons of Early Comparative Effectiveness Research, click here to view the paper
4. PCORI Offers Up to $150.7 Million to Support Second Phase of Development of PCORnet, click here to view the press release.
5. Forbes: Big Data Smoothes Out The Business Of Government, click here to view the full article.
6. ProHealth: 10 Important Advances in ME/CFS, click here to view the article.
7. U.S. Chamber of Commerce Foundation: Real World Data – The Challenge That Can't Be Refused, click here to view the article.
8. Medical Journal Articles, see details below.
9. AHRQ Effective Program Updates, see details below.
1. Save the Date: PIPC’s Patient Empowerment Webinar on January 20
Please join PIPC for an innovative webinar on Tuesday, January 20 at 2:00pm EST to discuss the importance of patient empowerment. As lawmakers in Washington seek to build a “patient-centered healthcare system,” hear from real patients and health policy experts who will examine what decisions are being made, and how it could impact people like you. Additional details will be posted here as they become available. To RSVP, kindly email Jessica Golibart ([email protected]<script cf-hash='f9e31' type="text/javascript"> /* */</script>).
2. PIPC Comments on PCORI Dissemination and Implementation Action Plan
On December 19, 2014, PIPC responded to the specific questions posed by Mathematica to the public regarding its draft Dissemination and Implementation Action Plan for PCORI. Click here to view. PIPC made the following recommendations to Mathematica:
It should be the explicit goal of dissemination to better support shared decision-making between patients and providers.
With regard to implementation, we would urge PCORI to be vigilant in following the guidance of its authorizing statute. PIPC would emphasize that implementation of research must also include strong protections against the “one-size fits all” coverage policies that are often the unintended consequences of clinical guidelines and performance measures.
PIPC urges the Institute to establish principles based on which it will assess the appropriateness of individual studies for targeted dissemination activities through a public notice-and-comment process.
Just as PCORI is required to provide notice and comment on its national priorities and research agenda, PIPC would strongly recommend that the public be given an opportunity to weigh in on the dissemination strategies within priority topic areas.
PCORI should provide additional details on how the Peer Review Process—through which all research reports will be made public—will interface and function seamlessly with the dissemination process.
We would propose that PCORI’s engagement activities would be simpler and more effective if the Institute were to identify partners for dissemination prospectively and simultaneous to the identification of priority topics for research.
We would urge PCORI to identify its priority topics (from both the investigator-initiated process, and from its advisory panel process) so that dissemination subcommittees can be established as soon as possible consistent with those areas of research.
We would also strongly recommend that the dissemination subcommittees not be limited to membership from within the broader Dissemination Advisory Panel.
Although the specific activities and tactics may differ by research project, we urge AHRQ to more effectively use its PCOR Trust Fund dollars to support the activities and strategies identified as most effective by patients and providers who will ultimately be relied upon to demonstrate the credibility and usability of the research being disseminated.
3. Journal Summarizes Lessons of Early Comparative Effectiveness Research
A new journal published in the Journal of Comparative Effectiveness Research summarizes key takeaways from $100 million in projects that use electronic data for research. The 12 projects were managed by the Agency for Healthcare Research Quality, funded by the 2009 stimulus package and provided the foundation for the National Patient-Centered Clinical Research Network, or PCORnet. Among the lessons learned are the need to standardize commonly used terms and definitions and improve the quality of data, as well as the need for stakeholder engagement and the use of more analytic tools in diverse settings. Comparative effectiveness research, which compares the impact of different treatments for the same condition, can’t be conducted, in many cases, without health IT. “A close collaboration between the clinical informatics, clinical, patient, and [comparative effectiveness research] communities has the potential to rapidly and efficiently generate evidence to fill our large knowledge gaps,” according to the paper. Click here to view the paper.
4. PCORI Offers Up to $150.7 Million to Support Second Phase of Development of PCORnet
Just before the many broke for the holidays, PCORI issued two funding announcements offering a total of up to $150.7 million to support further development of the health systems-based and patient-powered data networks that comprise PCORnet, the National Patient-Centered Clinical Research Network. According to a press release, “’we're excited to announce this funding opportunity for the second phase of PCORnet,’ said Rachael Fleurence, PhD, Director of PCORI's CER Methods and Infrastructure Program, the program which oversees PCORnet. ‘We've made tremendous progress with our current 29 networks during the first phase of this national initiative, and we look forward to capitalizing on the infrastructure built so far. PCORnet will begin supporting research, both observational and randomized, in phase II and we're excited about its increasing capacity to generate evidence that will help patients and those who care for them make better informed decisions.’” Click here to view the press release.
Among the various outlets to comments on the announcement:
Healthcare IT News reported, “The Patient-Centered Outcomes Research Institute – PCORI – is offering up to $150.7 million to support further development of networks that make up PCORnet...Phase II funding aims to enable the participating networks to become fully capable of supporting both randomized and observational CER studies, rapid-cycle studies, and other types of health research using robust standardized data sets with strong patient privacy and security protections.”
Fierce Health IT said, “[PCORI] plans to award up to $82.7 million to clinical data research networks (CDRNs) for access to the data of at least 1 million patients. PCORI will pay for $8.75 million in direct costs for up to 13 networks over a three-year period.”
Government Health IT highlighted that “PCORI has also announced $26.4 million in funding for up to 22 patient-powered research networks (PPRNs) as part of Phase II of PCORnet. PCORI will provide each network with three-year $1.2 million awards...These activities will strengthen the PPRNs capacity to participate in high-quality, rapid, and efficient patient-centered research within PCORnet.”
5. Forbes: Big Data Smoothes Out The Business Of Government
Author David Loshin of Forbes commented last week, “Pattern analysis, filtering and decision-tree analytics can combine large amounts of documents, images and sensor data with electronic health records to assess comparative effectiveness of medical diagnoses. Ongoing monitoring of population health can be achieved to enhance the overall quality of healthcare and improve outcomes.” Click here to view the article.
6. ProHealth: 10 Important Advances in ME/CFS
Writing for ProHealth.Com last week, Dr. Suzanne D. Vernon and Dr. Anthony Komaroff said, “Patient-centered outcomes research seeks to determine if a treatment is leading to an improved outcome: reduced symptoms and suffering. One problem with outcomes research has been that the ‘outcomes’ that doctors measure do not always reflect the outcomes that are important to patients.” Click here to view the article.
7. U.S. Chamber of Commerce Foundation: Real World Data – The Challenge That Can't Be Refused
Before the holiday break, Kirsten Axelsen and Marc Berger of the U.S. Chamber of Commerce Foundation penned a column: “Given that evidence produced using healthcare datasets will inform delivery and payment decisions, it is important to prevent the development and use of poor, low-quality evidence, which would ultimately put patients' health at risk. This means ensuring that appropriate and clear methodological standards for performing research using healthcare data are established, communicated, and broadly used. The research standards established by the Patient-Centered Outcomes Research Institute (PCORI) could be a good foundation.” Click here to view the article.
8. Medical Journal Articles
Comparative Effectiveness Research: Decision-Based Evidence: Click here to view.
The Clinical Inadequacy of Evidence-Based Medicine and the Need for a Conceptual Framework Based on Clinical Judgment: Click here to view.
SUPPORT and the Ethics of Study Implementation: Lessons for Comparative Effectiveness Research from the Trial of Oxygen Therapy for Premature Babies: Click here to view.
Management of Hyperglycemia in Type 2 Diabetes, 2015: A Patient-Centered Approach: Click here to view.
Expert Opinion: Supplementing the Gaps in Evidence-Based Medicine: Click here to view.
9. AHRQ Effective Program Updates
Decision Aids for Cancer Screening and Treatment: Click here to view the final report.
Clostridium Difficile Infection Update: Click here to view the research protocol.
Strategies to Improve Mental Health Care for Children and Adolescents: Click here to view the research protocol.
Disruptive Behavior Disorder: Click here to comment before January 27, 2015
Please join PIPC for an innovative webinar on Tuesday, January 20 at 2:00pm EST to discuss the importance of patient empowerment. As lawmakers in Washington seek to build a “patient-centered healthcare system,” hear from real patients and health policy experts who will examine what decisions are being made, and how it could impact people like you. Additional details will be posted here as they become available. To RSVP, kindly email Jessica Golibart ([email protected]<script cf-hash='f9e31' type="text/javascript"> /* */</script>).
2. PIPC Comments on PCORI Dissemination and Implementation Action Plan
On December 19, 2014, PIPC responded to the specific questions posed by Mathematica to the public regarding its draft Dissemination and Implementation Action Plan for PCORI. Click here to view. PIPC made the following recommendations to Mathematica:
It should be the explicit goal of dissemination to better support shared decision-making between patients and providers.
With regard to implementation, we would urge PCORI to be vigilant in following the guidance of its authorizing statute. PIPC would emphasize that implementation of research must also include strong protections against the “one-size fits all” coverage policies that are often the unintended consequences of clinical guidelines and performance measures.
PIPC urges the Institute to establish principles based on which it will assess the appropriateness of individual studies for targeted dissemination activities through a public notice-and-comment process.
Just as PCORI is required to provide notice and comment on its national priorities and research agenda, PIPC would strongly recommend that the public be given an opportunity to weigh in on the dissemination strategies within priority topic areas.
PCORI should provide additional details on how the Peer Review Process—through which all research reports will be made public—will interface and function seamlessly with the dissemination process.
We would propose that PCORI’s engagement activities would be simpler and more effective if the Institute were to identify partners for dissemination prospectively and simultaneous to the identification of priority topics for research.
We would urge PCORI to identify its priority topics (from both the investigator-initiated process, and from its advisory panel process) so that dissemination subcommittees can be established as soon as possible consistent with those areas of research.
We would also strongly recommend that the dissemination subcommittees not be limited to membership from within the broader Dissemination Advisory Panel.
Although the specific activities and tactics may differ by research project, we urge AHRQ to more effectively use its PCOR Trust Fund dollars to support the activities and strategies identified as most effective by patients and providers who will ultimately be relied upon to demonstrate the credibility and usability of the research being disseminated.
3. Journal Summarizes Lessons of Early Comparative Effectiveness Research
A new journal published in the Journal of Comparative Effectiveness Research summarizes key takeaways from $100 million in projects that use electronic data for research. The 12 projects were managed by the Agency for Healthcare Research Quality, funded by the 2009 stimulus package and provided the foundation for the National Patient-Centered Clinical Research Network, or PCORnet. Among the lessons learned are the need to standardize commonly used terms and definitions and improve the quality of data, as well as the need for stakeholder engagement and the use of more analytic tools in diverse settings. Comparative effectiveness research, which compares the impact of different treatments for the same condition, can’t be conducted, in many cases, without health IT. “A close collaboration between the clinical informatics, clinical, patient, and [comparative effectiveness research] communities has the potential to rapidly and efficiently generate evidence to fill our large knowledge gaps,” according to the paper. Click here to view the paper.
4. PCORI Offers Up to $150.7 Million to Support Second Phase of Development of PCORnet
Just before the many broke for the holidays, PCORI issued two funding announcements offering a total of up to $150.7 million to support further development of the health systems-based and patient-powered data networks that comprise PCORnet, the National Patient-Centered Clinical Research Network. According to a press release, “’we're excited to announce this funding opportunity for the second phase of PCORnet,’ said Rachael Fleurence, PhD, Director of PCORI's CER Methods and Infrastructure Program, the program which oversees PCORnet. ‘We've made tremendous progress with our current 29 networks during the first phase of this national initiative, and we look forward to capitalizing on the infrastructure built so far. PCORnet will begin supporting research, both observational and randomized, in phase II and we're excited about its increasing capacity to generate evidence that will help patients and those who care for them make better informed decisions.’” Click here to view the press release.
Among the various outlets to comments on the announcement:
Healthcare IT News reported, “The Patient-Centered Outcomes Research Institute – PCORI – is offering up to $150.7 million to support further development of networks that make up PCORnet...Phase II funding aims to enable the participating networks to become fully capable of supporting both randomized and observational CER studies, rapid-cycle studies, and other types of health research using robust standardized data sets with strong patient privacy and security protections.”
Fierce Health IT said, “[PCORI] plans to award up to $82.7 million to clinical data research networks (CDRNs) for access to the data of at least 1 million patients. PCORI will pay for $8.75 million in direct costs for up to 13 networks over a three-year period.”
Government Health IT highlighted that “PCORI has also announced $26.4 million in funding for up to 22 patient-powered research networks (PPRNs) as part of Phase II of PCORnet. PCORI will provide each network with three-year $1.2 million awards...These activities will strengthen the PPRNs capacity to participate in high-quality, rapid, and efficient patient-centered research within PCORnet.”
5. Forbes: Big Data Smoothes Out The Business Of Government
Author David Loshin of Forbes commented last week, “Pattern analysis, filtering and decision-tree analytics can combine large amounts of documents, images and sensor data with electronic health records to assess comparative effectiveness of medical diagnoses. Ongoing monitoring of population health can be achieved to enhance the overall quality of healthcare and improve outcomes.” Click here to view the article.
6. ProHealth: 10 Important Advances in ME/CFS
Writing for ProHealth.Com last week, Dr. Suzanne D. Vernon and Dr. Anthony Komaroff said, “Patient-centered outcomes research seeks to determine if a treatment is leading to an improved outcome: reduced symptoms and suffering. One problem with outcomes research has been that the ‘outcomes’ that doctors measure do not always reflect the outcomes that are important to patients.” Click here to view the article.
7. U.S. Chamber of Commerce Foundation: Real World Data – The Challenge That Can't Be Refused
Before the holiday break, Kirsten Axelsen and Marc Berger of the U.S. Chamber of Commerce Foundation penned a column: “Given that evidence produced using healthcare datasets will inform delivery and payment decisions, it is important to prevent the development and use of poor, low-quality evidence, which would ultimately put patients' health at risk. This means ensuring that appropriate and clear methodological standards for performing research using healthcare data are established, communicated, and broadly used. The research standards established by the Patient-Centered Outcomes Research Institute (PCORI) could be a good foundation.” Click here to view the article.
8. Medical Journal Articles
Comparative Effectiveness Research: Decision-Based Evidence: Click here to view.
The Clinical Inadequacy of Evidence-Based Medicine and the Need for a Conceptual Framework Based on Clinical Judgment: Click here to view.
SUPPORT and the Ethics of Study Implementation: Lessons for Comparative Effectiveness Research from the Trial of Oxygen Therapy for Premature Babies: Click here to view.
Management of Hyperglycemia in Type 2 Diabetes, 2015: A Patient-Centered Approach: Click here to view.
Expert Opinion: Supplementing the Gaps in Evidence-Based Medicine: Click here to view.
9. AHRQ Effective Program Updates
Decision Aids for Cancer Screening and Treatment: Click here to view the final report.
Clostridium Difficile Infection Update: Click here to view the research protocol.
Strategies to Improve Mental Health Care for Children and Adolescents: Click here to view the research protocol.
Disruptive Behavior Disorder: Click here to comment before January 27, 2015
