What would make them more useful?
PIPC would reiterate many of the concerns highlighted during the webinar on December 10, 2014, including the need for simplification of the toolkit, and its application to different audiences.
PIPC urges PCORI to engage patients and providers early and often in its research process so that its partners are apparent and already included by the dissemination stage. Patients, patient groups and providers will be PCORI’s most vital ally in determining the most effective stakeholders with whom to partner for effective dissemination from the various stakeholder communities. It should be the explicit goal of dissemination to better support shared decision-making between patients and providers. Therefore, patients and providers should be engaged each step of the research process.
With regard to implementation, we would urge PCORI to be vigilant in following the guidance of its authorizing statute. As you know, the statute states that the “Institute shall ensure that research findings…do not include practice guidelines, coverage recommendations, payment, or policy recommendations.” This provision was intended to protect the relationship between providers and patients and to mitigate a “one-size fits all” mentality of health care treatment. A focus on dissemination strategies that support shared decision-making clearly fall within the statute’s guidelines, particularly to “convey the findings of research in a manner that is comprehensible and useful to patients and providers in making health care decisions.” It should be the explicit goal of dissemination to empower patients in their interactions with providers.
Evidence assessment. To what extent is this chapter helpful in determining whether and under what circumstances evidence should be disseminated to various stakeholder audiences and potentially implemented broadly?
In addition to what is included in this chapter, what else should PCORI consider to determine whether evidence is appropriate for dissemination?
PIPC agrees that evidence assessment must be a fundamental component of its dissemination process. We agree that the PCORI Methodology Committee should provide guidance on the criteria and standards used for this assessment. Though it was not clear from the Framework document itself, to the extent that PCORI intends to establish principles based on which it will assess the appropriateness of individual studies for targeted dissemination activities, PIPC urges the Institute to establish such principles through a public notice-and-comment process. Doing so will provide the primary constituencies of dissemination, patients and providers in the real world, with the opportunity to contribute to this governing process from the outset. We are also concerned that the role of patients and patient groups is not stated more predominantly in the report. In each bulleted section, we would propose a more explicit statement that patients, patient groups and providers will be relied upon to contribute to these processes. Although somewhat captured by the third bullet stating, “Determine why the evidence matters to patients, other stakeholders, health policy, and practice,” PIPC would propose that the role of patients and providers be more explicit to apply throughout the 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. In doing so, the process will be more transparent and inclusive, and provide PCORI the opportunity to benefit from the input of stakeholders with different expertise and experiences that would otherwise have been overlooked.
In addition, 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. All of the information on a PCORI-funded study should be available to patients in one place, be understandable, identify study limitations, and provide sufficient context for the research and its findings, and all other required elements (e.g., conflict of interest reports from researchers).
Audience and partner identification. To what extent is this chapter helpful in developing a process by which PCORI may identify the audiences who might benefit from the evidence and the partners who might collaborate with PCORI to reach the audiences?
In addition to the actions included in this chapter, what other specific actions could PCORI take to (1) identify audiences that could benefit from knowing about new research findings or (2) identify partners who can help share those findings?
What is missing from this section is a description of - what should be - the seamless nature of engagement at PCORI. We recognize that many of PCORI’s national priorities have, in essence, been created defacto through its broad funding announcement process. We also recognize that PCORI has adopted new processes to identify priority topics that more strategically utilize stakeholder engagement to identify the research questions that matter most to patients. 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. This is especially important as PCORI begins to move from issuing traditional, broader funding announcements toward a funding model that focuses on defining targeted funding opportunities around priority topics (represented both by the clusters of research around specific topics identified by the investigator-initiated process, and the priority topics more strategically identified through the advisory panel process). Such a prospective approach, integrated with the development of research questions, would allow the institute to identify its partners earlier in the research process, and would maximize the institute’s ability to identify the most effective individuals among its partners to be engaged at the various stages of research (identification of priority topics and research questions through dissemination).
Dissemination. To what extent is this chapter helpful in offering actionable guidance on how to develop and execute a dissemination plan?
Are there any dissemination tactics or strategies missing from the list in this chapter? What else should PCORI and its partners consider in developing and delivering the dissemination message?
PIPC strongly supports the draft report’s recommendation for PCORI to create a Dissemination Advisory Panel. We agree that both a broad-based panel informing general protocols for dissemination is needed, with additional sub-groups or subcommittees to address the nuances of each area of research being disseminated. As discussed above, we would urge PCORI to identify its priority topics (from both the investigator-initiated process, and from its advisory panel process) so that these dissemination subcommittees can be established as soon as possible consistent with those areas of research. We would anticipate that PCORI would also have expert advisory panels established within those areas of research for the front end of development of research questions similar to the process utilized by PCORI for hepatitis C. By identifying key stakeholders in the front end of research, PCORI should be able to effectively call upon those stakeholders as resources for identifying individuals capable of providing guidance on the back end of dissemination as well. We would also strongly recommend that the subcommittees not be limited to membership from within the broader Dissemination Advisory Panel. The individuals best suited for each panel may be very different. We would also ask for additional clarification on how the Dissemination Advisory Panel and the Advisory Panel on Communication and Dissemination interact and potentially collaborate. We believe that additional input from patients and providers would be useful to develop the scope of work for each panel, mitigate overlap in their work, and determine how they can best collaborate.
Implementation. To what extent is this chapter helpful in outlining a process by which PCORI may augment its stakeholder engagement activities to facilitate and/or support implementation?
In addition to the ideas noted in this chapter, what else could PCORI and its partners consider doing to facilitate adoption and use of evidence on patient-centered outcomes research?
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. As discussed earlier, the statute states that the “Institute shall ensure that research findings…do not include practice guidelines, coverage recommendations, payment, or policy recommendations.” Patients and clinicians want to have good information as a tool to deliver personalized medicine – not to drive a forced treatment decision. Therefore, patients and providers must be PCORI’s strongest allies and partners in the dissemination process to mitigate this kind of unintended outcome. The goal should be explicitly stated as improving patients’ access to information at the point of healthcare decision-making and preserving shared decision-making between patients and providers.
Evaluation. To what extent is this chapter helpful in planning for ongoing evaluation of D&I activities to ensure that intended goals are met and to inform future activities?
In addition to what is included in this chapter, what other methods, data sources, or tools could PCORI and its partners use to evaluate dissemination and implementation strategies?
Please rate the extent to which you agree or disagree with the following statements:
Overall, these materials will help PCORI and its partners increase reach to relevant audiences with health care evidence.
Overall, these materials will help PCORI and its partners facilitate implementation of health care evidence.
Please provide any additional comments that you have not already provided about any aspect of the Framework and Toolkit.
PIPC agrees that PCORI should be partnering with AHRQ on the recommended strategies in this report. AHRQ has significant funding from the PCOR Trust Fund to conduct dissemination activities, that would be more effective if the funded activities were focused on strategies identified by patients and providers as effectively supporting shared decision-making. A few recommendations that PIPC has provided to PCORI and AHRQ in the past include: designating resources to support co-branding with patient and provider groups; building capacity of patient and provider groups to disseminate research; and conducting focus groups for patients and providers to test decision aids to ensure they are presented in accessible language, prior to their finalization. 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.
 Affordable Care Act of 2010 § 6301(d)(8).
 Affordable Care Act of 2010 § 6301(d)(8).