PIPC conducted a national survey of 1,500 registered voters between May 28 – June 5, 2013 to ascertain public opinion regarding CER and attitudes concerning the appropriate role of a federal CER Institute.
On Monday, June 10, 2013, the Partnership to Improve Patient Care (PIPC) and the American Association of People with Disabilities (AAPD) convened a roundtable representing people with disabilities in an effort to provide PCORI with consensus recommendations to develop research contracts beneficial to the disability community. PCORI researchers were present to outline the parameters for the research projects that PCORI can fund, as well as the process for working with PCORI.
In an article published in Inside Health Policy, Partnership to Improve Patient Care (PIPC) Chair Tony Coelho reacts to PIPC's absence from PCORI's roundtable on data dissemination, as well as a new poll which highlights the need to communicate research with the patient community. According to the article, "[Chairman] Coelho says PCORI is not involving enough patient representatives in PCORI's work to disseminate comparative effectiveness research findings, but a spokesperson for the Patient-Centered Outcomes Research Institute says the July 29 roundtable on CER dissemination includes representatives from patient, caregiver and consumers organizations, including a PIPC member organization. PCORI is holding a roundtable on Monday (July 29) to plan for communicating CER findings to the public, and PIPC was not invited, despite several requests to participate, Coelho says. Coehlo says the roundtable should include more patient representatives, and PCORI indicated to him that including consumer representatives satisfies the requirement to get patient input.
Since the creation of PCORI, it has been clear to PIPC that it would be crucial for patients and physicians to work together in support of an agenda that is responsive to our shared needs at the point of treatment decision-making. To that end, PIPC supported a series of roundtables with leading physician and patient organizations beginning in early 2012 to identify, discuss, and define potential next steps in key areas of PCORI’s work. Leading medical societies that serve on PIPC’s Steering Committee – such as the American College of Cardiology and American Association of Neurological Surgeons – were instrumental in helping organize several of these roundtables.
In letter to the editor in response to a recent New York Times op-ed, PIPC Chairman Tony Coelho writes that PIPC cautions against one-size fits all solutions to patient care. "Physicians are very capable of weighing the evidence and individualizing care based on it. It would be a mistake to expand high-cost programs like 'counter detailing' that outsource that judgment and impose 'one size fits all' recommendations based on the assumption that doctors are not capable of making their own judgments," Coehlo writes. "As a person with epilepsy, I know that one size does not fit all, and I know the importance of good decision-support tools."
The San Jose Mercury News recently published an article on the promise - and the concerns - of comparative effectiveness research as overseen by the Patient Centered Outcomes Research Institute (PCORI):
"Critics said they fear [comparative effectiveness] research could lead to health care rationing if the government uses the results to ax effective treatments simply because they cost too much. To address such criticisms, legislation discouraged the new institute from doing cost comparisons. That has erased many of the concerns initially raised by groups such as the Partnership to Improve Patient Care, a private organization formed in 2008 that includes representatives of drug manufacturers, device-makers and patient groups. Now the group's chairman, former Rep. Tony Coelho, a Democrat who represented the San Joaquin Valley area, said he wants to make sure that patients are involved in the new institute's decision-making and that doctors and patients can understand the research findings." Ever since I was young, people turned their back on me because of my disability. Down but not out, I overcame this hurdle and have gone on to devote the past 40 years of professional life to fighting for the disabled in our country. But the fight to improve the lives of people with disabilities did not end there. Today, the fight continues
The Patient Centered Outcomes Research Institute (PCORI) has named PIPC Executive Director Sara van Geertruyden to their Advisory Panel on Patient Engagement. According to a press release from PCORI, "These panels will be instrumental in helping us refine and prioritize research questions, provide needed scientific and technical expertise, offer input on other issues relevant to our mission, and help us model full and meaningful patient and stakeholder engagement efforts. The Advisory Panel on Patient Engagement will be instrumental in helping us to assure the highest patient engagement standards and a culture of patient-centeredness in all aspects of our work."
WASHINGTON D.C. – The Partnership to Improve Patient Care (PIPC) and Bloomberg Government today co-hosted “Achieving Patient-Centered CER: Looking Ahead to 2013” a forum on how implementation of patient-centered comparative effectiveness research (CER) is progressing at the Patient-Centered Outcomes Research Institute (PCORI). After opening remarks by PIPC Chairman Tony Coelho, Dr. Joe Selby, the executive director of PCORI, gave a keynote speech and Brian Rye, healthcare analyst with Bloomberg Government, moderated a panel discussion with healthcare leaders and patient advocates.
PCORI Issues Call for Applications to Fund Up to $12 Million in Projects to Improve Research Methods11/16/2012
WASHINGTON D.C. -- The Patient-Centered Outcomes Research Institute (PCORI) today released a funding announcement to support research that addresses methodological gaps in patient-centered outcomes research (PCOR).
WASHINGTON D.C. – The Partnership to Improve Patient Care (PIPC) issued the following statement thanking the Patient-Centered Outcomes Research Institute (PCORI) for hosting a National Patient and Stakeholder Dialogue meeting in Washington, D.C. on setting priorities for comparative effectiveness research (CER) and calling on the Institute to make several changes to its draft priorities and process.
WASHINGTON D.C. – In opening remarks at the Partnership to Improve Patient Care’s (PIPC) 2nd annual forum in Washington, D.C., Chairman Tony Coelho praised the steps made over the past year in achieving patient-centered comparative effectiveness research, and called for continued progress. Commenting on the creation and initial work of the Patient-Centered Outcomes Research Institute (PCORI) over the past year, Coelho said: “We appreciate the progress that’s been made, and we are looking for the progress to continue.”Coelho was joined at the forum by PCORI Executive Director Joe Selby and a panel of experts from the patient, provider and health policy sectors who discussed progress made, and additional steps that need to be taken, to ensure that the patient is the focus of effectiveness research. “Being patient-centered is much easier said than done, but since becoming law, PCORI has taken positive steps in its work towards implementing patient-centered CER,” PIPC Chairman Tony Coelho said. He highlighted PCORI’s commitment to hiring a “Chief Patient Officer” and its decision to solicit and release comments on the draft definition of patient-centered outcomes research as two recent examples of positive steps taken by the Institute.
In a recent letter in the St. Louis Times Dispatch, Drs. Palmisano and Gale stressed the importance of establishing open, transparent procedures in the Patient-Centered Outcomes Research Institute.
A little-noticed provision of the Fiscal Year 2011 Continuing Resolution which was passed earlier this month requires the Government Accountability Office to conduct an audit of government CER projects funded by the Recovery Act and the Patient Protection and Affordable Care Act. Due just two months from the date of enactment, this provision could prove interesting to anyone who follows the issue of comparative effectiveness research. The provision states:
According to an article in Inside Health Policy, the American Medical Association is circulating a letter set go to the Patient-Centered Outcomes Research Institute (PCORI) raising concerns should PCORI use cost considerations in their definition of what they considered Patient Centered Outcomes Research (PCOR).
The article quoted AMA's letter as echoing concern with the potential inclusion of cost-based research in the definition: “We do have questions concerning the last component of the definition that provides that PCOR: '[i]nvestigates (or may investigate) optimizing outcomes while addressing burden to individuals, resources, and other stakeholder perspectives.'” |
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