Talk:Patient-Centered Outcomes Research Institute

Article revision

The PCORI article was tagged over two years ago with requests for revision (1. This article needs to be updated. (March 2017); 2. The neutrality of this article is disputed. (March 2017); 3. This article includes a list of references, related reading or external links, but its sources remain unclear because it lacks inline citations. (March 2017)), with little evidence that sufficient edits were made to remove the multiple issue tags. Amongst other contributions I make across Wikimedia projects, I work with PCORI as a Wikipedian-in-Residence, and while I mainly serve as a liaison and within an educational capacity, I want to avoid any potential conflict of interest in making these edits directly so am raising this issue in this article revision request.

As some of the current information in the article is incorrect and while a number of the claims are unsourced, I worked in my Sandbox on what I here submit to our community for review as a better-sourced, accurate, and neutral article. All the sources I used in my sandbox revision are high-quality peer-reviewed articles and government documents. I avoided organizational self-references outside financial data, which is otherwise confirmed from third party government oversight sources. I posted this the Talk: page a couple days ago and have not gotten a response, so am adding a {{edit COI}} tag to try to get feedback and other community editors involved in this review.

I request community review of my draft, minus the explanatory information at the top of the page and I welcome feedback and discussion on it. I hope that together our community can revise this article in a way that brings value to our encyclopedia. --- --- FULBERT (talk) 18:58, 6 September 2019 (UTC)

Feedback 06-SEP-2019

The draft looks great! Just a few items of feedback:

1. Ref tag No. 1 is missing completely.
2. Under Funded research the quotation which begins with "lay and technical abstracts of the report; the complete, approved final report and study protocol; and a summary of the peer review critiques and the authors’ responses to those critiques. does not contain the closed-quotation mark of the set.
3. The law governing PCORI prohibits it from developing or employing "a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual's disability) as a threshold to establish what type of health care is cost effective or recommended". This means that PCORI funds research studies that focus on patient-centered outcomes, rather than only on comparative effectiveness research (CER) alone. Since the quote at the beginning of this section of text is later paraphrased (after "this means"), the quote itself may be omitted in favor of supplying just the paraphrased text.
4. The quote in the Purpose section may be only one sentence, but it is quite long and verbose, and would benefit from either being paraphrased or placed in a block quotation.
5. Ref tag No. 2's citation template is missing the |page= parameter.
6. Ref tag No. 12 is a listing of reports, and as such, is not very specific to where the information is located.
7. Ref tag No. 3 (and to a lesser extent, ref tags 4, 5, and 6) give broad page ranges rather than a single page (or two, if that be the case).
8. The claim referenced by ref tag No. 17 is WP:SYNTH.
9. The Criticism section is unreferenced. Any critical information ought to be integrated into the main section, per WP:CSECTION.

Thank you for your help on this! Regards,  Spintendo  21:15, 6 September 2019 (UTC)

Spintendo, Thanks for your careful review of this and helpful feedback. Can I make the edits in my linked sandbox here and re ping you for your feedback and guidance? FULBERT (talk) 03:33, 7 September 2019 (UTC)

Once the feedback changes have been implemented and the request is ready for final review, you may either leave the draft in your sandbox or place the draft here on the talk page in-between {{collapsed top}} and {{collapsed bottom}} templates — just as long as all of the items are in one central location. Whichever way you choose, be sure to change the talk page's {{request edit}} template answer parameter to read from |ans=yes to |ans=no, to indicate that you're ready to proceed. Thank you! Regards,  Spintendo  19:44, 9 September 2019 (UTC)

Thanks for the feedback and guidance as to next steps Spintendo. I believe I fixed the issues you raised and in the process included more specific and external citations throughout. I also attempted to move this draft here to make it easier to review within the tags you suggested I use for this purpose. I look forward to your review. --- FULBERT (talk) 03:19, 12 September 2019 (UTC)

If I damaged some overall Talk: page formatting in the process of moving the draft here Spintendo, I can remove it again as it is the same as in my Sandbox if that helps this page be more clearly readable. Sorry for any confusion this may have caused. --- FULBERT (talk) 03:23, 12 September 2019 (UTC)

Extended content

Patient-Centered Outcomes Research Institute

Type	Nonprofit organization
Legal status	501(c)(1) organization
Executive Director	Joe V. Selby, MD, MPH
Website	www.pcori.org

The Patient-Centered Outcomes Research Institute (PCORI) is a United States-based non-profit institute created through the 2010 Patient Protection and Affordable Care Act. As a nongovernmental 501(c)(1) organization, it focuses on patient-centered outcomes research (PCOR) that produces findings about the comparative trade-offs of healthcare options that help people and caregivers make more informed healthcare decisions.

Purpose

Created through the Affordable Care Act, PCORI seeks to "integrate the patient’s voice into the research process" and fund research that that may result in a change in medical practice in areas of importance to patients, caregivers, and clinicians. PCORI was created to

"to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis that considers variations in patient subpopulations, and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments, services, and items described."

PCORI funds research studies that focus on patient-centered outcomes, rather than only on comparative effectiveness research (CER) alone. Patient-centered outcomes research involves questions and outcomes "meaningful and important to patients and caregivers"to help them make informed decisions for their own care. In this way, it is different from the United Kingdom's National Institute for Health and Care Excellence, which determines cost-effectiveness directly based on quality-adjusted life year valuations.

Funding

PCORI is funded through the Patient-Centered Outcomes Research Trust Fund (PCORTF), which was authorized by the United States Congress as part of the Patient Protection and Affordable Care Act of 2010. Its annual income comes from the general fund of the Treasury and a small fee assessed on Medicare, private health insurance, and self-insured plans. The act mandates a $2 fee, adjusted for inflation, for each person covered on a group plan.

PCORI is fully U.S. government funded, and does not seek nor accept contributions from any other source. All its financial reports are public, along with an annual audit by the U.S. Government Accountability Office (GAO). In 2018, its revenue was $506,485,458, with approved research awards of $308,000,000. Since its founding, PCORI has funded over $2.5 billion USD in patient-centered outcomes research and related projects.

Funded Research

PCORI's authorizing legislation requires it "to guarantee peer review of all research results and to make those results publicly accessible within 90 days of their receipt, requirements that were the first of their kind for a US-based research funding organization." To assist in this process, the PCORI board of governors requires all awardees to submit a comprehensive final report for PCORI-based external peer review, which is then posted and freely available on its website to include both "lay and technical abstracts of the report; the complete, approved final report and study protocol; and a summary of the peer review critiques and the authors’ responses to those critiques."

National priorities were established to guide research. These include "assessment of options for prevention, diagnosis, and treatment; improving health care systems; dissemination and communications research; addressing disparities; and accelerating patient-centered outcomes research and methodology." From these, there have been 65 research standards developed to support patient-centered outcomes research used to guide over 600 funded studies awarded over the nine years PCORI has existed. All studies that have been funded, their reports on results, and the articles that have come from them are searchable and available through the PCORI site.

Funding from PCORI enabled the development of PCORnet, a collaboration of several research networks that together facilitate clinical research using health data collected in the course of care through electronic health records, claims data, patient registries, and other sources. Each participating site in PCORnet maintains its own data behind its own firewalls and transforms the data into a format specified by the PCORnet Common Data Model so that it can be used to conduct clinical research.

References

Feedback 12-SEP-2019

1. Ref tag No. 1 is missing the pdf page number.
2. Ref tag No. 2 is a page range of 8 pages, while the quote that this source is referencing is only 8 words in length. This would mean each word was published on its own page, which is not likely.
3. Ref tag No. 18 points to a list of reports and does not indicate which one is to be used.
4. Ref tag No. 4 is missing the date.
5. Ref tag No. 13 uses the {{cite journal}} template, but is missing the |journal= parameter.
6. Ref tag No. 20 uses a page range of 5 pages. Please confirm.
7. Ref tag No. 21 is missing the |page= parameter.
8. Ref tag No. 22 uses a page range of 7 pages. Please confirm.

Thank you! Regards,  Spintendo  07:43, 12 September 2019 (UTC)

Thanks for your feedback Spintendo. I made all the changes you requested except Ref tag No. 4, as the date was included already and unsure what if any other changes with it were needed. --- FULBERT (talk) 19:28, 12 September 2019 (UTC)

@FULBERT: Thank you for the updates. Ref tag No. 4 was showing an error because you entered two dates, one under the |date= parameter and one under a |year= parameter, when the parser will only accept one or the other. I deleted the year parameter. Additionally, the references which contain |PMC= parameters are showing errors because you've included the prefix "PMC" with the number, when only the number is required. I will continue reviewing the text shortly. Thank you for your help! Regards,  Spintendo  21:02, 12 September 2019 (UTC)

I really hope you can show me how you found some of those citation errors, as I did not see them or have any color-change or the like Spintendo. Whatever tool you use is one I really need to learn! Also, I realized as one would do on a regular article, the fixes I made above were done in place of the initial ones. It did not occur to me it may be helpful to have otherwise added those as an entire second set of clean copy. That would have made this Talk page very long, but it did not even occur to me at the time. Hope that was not a problem, though everything is certainly viewable in the history. Thanks again for your ongoing review. --- FULBERT (talk) 00:02, 13 September 2019 (UTC)

What is the next part of the process for moving this into mainspace Spintendo, as I believe I made all the edits you suggested and have not received any other feedback or change requests? Thanks. --- FULBERT (talk) 06:42, 19 September 2019 (UTC)

I'll make the approved changes and list anything which still requires clarification by the end of the day. Thank you for your patience, it's most appreciated! Regards,  Spintendo  21:00, 19 September 2019 (UTC)

Proposal review and implementation 21-SEP-2019

Below you will see where proposals from your request have been quoted with reviewer decisions and feedback inserted underneath, either accepting, declining or otherwise commenting upon your proposal(s). Please read the enclosed notes within the proposal review section below for information on each request.

Proposal review 21-SEP-2019

The Patient-Centered Outcomes Research Institute (PCORI) is a United States-based non-profit institute created through the 2010 Patient Protection and Affordable Care Act.
Approved.


As a nongovernmental 501(c)(1) organization, it focuses on patient-centered outcomes research (PCOR) that produces findings about the comparative trade-offs of healthcare options that help people and caregivers make more informed healthcare decisions.
Declined.


Created through the Affordable Care Act, PCORI seeks to "integrate the patient’s voice into the research process" and fund research that that may result in a change in medical practice in areas of importance to patients, caregivers, and clinicians. PCORI was created to "to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis that considers variations in patient subpopulations, and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments, services, and items described."
Declined.


PCORI funds research studies that focus on patient-centered outcomes, rather than only on comparative effectiveness research (CER) alone. Patient-centered outcomes research involves questions and outcomes "meaningful and important to patients and caregivers" to help them make informed decisions for their own care.
Approved.


In this way, it is different from the United Kingdom's National Institute for Health and Care Excellence, which determines cost-effectiveness directly based on quality-adjusted life year valuations.
Declined.


PCORI is funded through the Patient-Centered Outcomes Research Trust Fund (PCORTF), which was authorized by the United States Congress as part of the Patient Protection and Affordable Care Act of 2010. Its annual income comes from the general fund of the Treasury and a small fee assessed on Medicare, private health insurance, and self-insured plans.
Approved.


The act mandates a $2 fee, adjusted for inflation, for each person covered on a group plan.
Approved.


PCORI is fully U.S. government funded, and does not seek nor accept contributions from any other source. All its financial reports are public, along with an annual audit by the U.S. Government Accountability Office (GAO).
Declined.


In 2018, its revenue was $506,485,458.
Approved.


Since its founding, PCORI has funded over $2.5 billion USD in patient-centered outcomes research and related projects.
Clarification needed.


PCORI's authorizing legislation requires it "to guarantee peer review of all research results and to make those results publicly accessible within 90 days of their receipt"
Approved.


requirements that were the first of their kind for a US-based research funding organization.
Declined.


To assist in this process, the PCORI board of governors requires all awardees to submit a comprehensive final report for PCORI-based external peer review, which is then posted and freely available on its website to include both "lay and technical abstracts of the report; the complete, approved final report and study protocol; and a summary of the peer review critiques and the authors’ responses to those critiques
Declined.


National priorities were established to guide research. These include "assessment of options for prevention, diagnosis, and treatment; improving health care systems; dissemination and communications research; addressing disparities; and accelerating patient-centered outcomes research and methodology."
Declined.


From these, there have been 65 research standards developed to support patient-centered outcomes research ... Funding from PCORI enabled the development of PCORnet, a collaboration of several research networks that together facilitate clinical research using health data collected in the course of care through electronic health records, claims data, patient registries, and other sources.
 Partly-approved.


used to guide over 600 funded studies awarded over the nine years PCORI has existed. Each participating site in PCORnet maintains its own data behind its own firewalls and transforms the data into a format specified by the PCORnet Common Data Model so that it can be used to conduct clinical research. All studies that have been funded, their reports on results, and the articles that have come from them are searchable and available through the PCORI site.
Declined.


___________

Additional changes made:

1. The {{Update}} maintenance template dated March 2017 was deleted.
2. The {{NPOV}} template dated March 2017 was deleted.
3. The {{Citations}} template dated March 2017 was deleted.
4. The Criticism section was omitted, as its arguments where ephemeral and not properly elaborated upon.
5. The credentials listed after executive director Selby's name in the infobox were omitted, per MOS:DOCTOR.
6. Grayson Norquist was added to the infobox as Chair of the Board of Governors.
7. The amounts given out as funding were delineated in the infobox under the |disbursements= parameter, with totals both from 2018 and cumulative from 2010.
8. The amount of revenue for 2018 was added to the infobox under the |revenue= parameter.

Regards,  Spintendo  23:53, 21 September 2019 (UTC)

Spintendo, I appreciate the process you followed with this review and article edit and revision. I also find the extended notes and discussion about this that will remain here on the Talk page of great use for any future reference. Many thanks. FULBERT (talk) 05:19, 22 September 2019 (UTC)

Notes

Request edit on 30 November 2022 Suggestion Comment Copyedit (minor) Reply

• What I think should be changed: The Chairperson of the Board of Governors has changed, and this should be updated in the Infobox. The current person in this role is Russell M. Howerton.
• Why it should be changed: To keep the information current.
• References supporting the possible change (format using the "cite" button):

FULBERT (talk) 18:27, 30 November 2022 (UTC)

References

Thank you for updating this. --FULBERT (talk) 08:46, 26 January 2023 (UTC)