The importance of involving KUs in the RR process

The involvement of KUs has been described as an iterative process of actively soliciting a broad range of interests to create a shared understanding and making relevant, transparent, and effective decisions.24 It is now widely accepted that active KU involvement is beneficial to the quality, relevance and impact of health research.25 Bringing together multiple KUs in a transparent, equitable and evidence-based way has driven national strategies in many countries to ensure involvement in all research activities relevant to both primary research and evidence synthesis.26–29

Specific to RRs, typically patient and public partners, healthcare providers and policy-makers are the key KU groups involved. Healthcare providers contribute clinical expertise to RRs, and deliver care directives that may be derived from RRs. Policy-makers are decision-makers, who shape the rules and regulations that govern our health and may contribute policy-relevant aspects (eg, care delivery, access, costs) to RRs. Finally, patient and public partners contribute lived experiences of a health issue. Therefore, each KU group brings a unique perspective to inform the goals and objectives of RR, and their involvement aims to ensure that their respective perspectives are reflected in the RR questions, outcomes measured and interpretation of findings.

Close collaboration is essential in the context of RRs. It allows opportunities for KUs to interact meaningfully throughout the process, ensuring the RR is feasible (ie, involvement that helps focus the scope and conduct of the RR making it more doable) and that results are relevant in the context of timely decision-making.5 Although few efforts have directly reported the effects of KU involvement in RRs, a recent study, which included a small select sample of RRs (n=30), found that 13 (43%) RRs identified involved KUs.30 Of these, 11 review authors surveyed confirmed that KU involvement had considerable effects on the study results, thereby making the RR more relevant to patients or policy-makers.30

As the ultimate end-users of research evidence stemming from RRs, it is essential to highlight the significance of patients (often referred to as patient partners) and members of the public as key KUs. Research suggests that individuals who are engaged in their health are more likely to achieve better health outcomes.25 31 Although examples of patient and partner involvement in SRs exist,32–34 involving patient and public partners in evidence synthesis is often limited or overlooked primarily due to a lack of guidance and promising ways to effectively engage them in the design and conduct of evidence synthesis.35 To date, patient and public partner involvement in RRs has also been limited18 30 and requires innovative ways to feasibly involve patients in planning, expeditious conduct and knowledge translation of such reviews.36

Because RRs is an evolving field, currently there is limited evidence to draw on to inform KU involvement. However, there is movement in the field. A recent priority setting partnership determined the top 10 unanswered research questions for RRs.37 Ranked highest was how to determine the best approaches to identify people or groups that will use the results of RR, and how they can have meaningful involvement in the various stages of a review. Also, highly ranked was determining how underserved stakeholder groups (eg, ethnic minorities, socioeconomically disadvantaged) and stakeholders from under-represented jurisdictions (eg, countries of different income levels) can best be identified and have meaningful involvement in RR. Therefore, KU involvement in RRs is an important area of interest as determined by researchers and KUs.

Ways and levels of involving KUs in RRs

At the outset, research teams should review the ACTIVE (Authors and Consumers Together Impacting on eVidencE) framework, which describes the range of methods and approaches for involving KUs in SRs.38 The ACTIVE framework outlines a continuum of KU involvement from receiving information about a review to leading the initiation and completion of a review. By extension, this framework could support RR authors in planning how to involve KUs at the different stages of the review process. There are opportunities to engage KUs at the1) preplanning, 2) initiation and planning stages, 3) during the conduct, and 4) at the end of RR (see table 1 adapted from).39 Practically, the extent of involvement may entail several touch points if KUs are included in a more integrated approach as team members.19 39 40

1. At the preplanning stage of a RR, KUs can be involved in determining topic relevancy and identifying priority areas for a review. Consider implementing a formal priority-setting exercise for those KU groups with many topics in contention for a RR. KUs can help to identify representatives of several groups and can facilitate establishing additional KU relations. KUs may also be instrumental in the preplanning and conceptualisation of a RR. In consultation with KU partners, agree on a plan that will work with what a researcher can offer that aligns with the KUs’ expectations and skill set.

2. At the initiation and planning stage of a RR, KUs can be involved in helping define the review objectives, including the RR questions. They can assist by reviewing the planned approach as part of the protocol. They can also provide input on the inclusion criteria. KUs can also support the literature search by providing a list of seed articles and key terms that should be considered. The SelecTing Approaches for Rapid Reviews tool was developed to aid review authors in planning the most suitable approach when conducting a RR41 and is something research teams could consider using to seek KU input in a structured way. The tool provides a series of questions the research team goes over with the RR commissioner to elicit the RR’s purpose and context, the questions to be answered, and how the RR will be conducted and used.

3. During the conduct of a RR, the process of including KUs is similar to SRs. They can take an active role in helping to screen, select and extract articles. Even if not directly participating in screening or extraction, soliciting their input on certain studies for inclusion or assisting in identifying potentially relevant studies or data extraction items is worthwhile. Although it is not common for KUs to be directly involved in data analysis or synthesis of the results, a key opportunity is to have them check the results and interpretation of findings to see if they make sense. Although most KUs would not be directly involved in drafting the resulting report, they may be involved in reviewing the draft, identifying key findings and developing or reviewing the implications of findings to ensure that they are relevant to the intended audiences.

4. At the end of a RR, KUs can play an important role in knowledge translation activities. They can be involved in developing key messages, plain language summaries and other dissemination activities. KUs can also help draft evidence summaries used in knowledge brokering or participate in communication strategies targeting social media platforms (eg, Facebook, Twitter). Importantly, KUs, alongside researchers, can advocate for findings to be shared in relevant circles in the health systems community to ensure findings reach their intended audiences, including relevant decision-makers.

As with SRs, there are various modes of engaging KUs in RRs,19 and each RR can employ a combination of different methods during the review lifecycle (see figure 1). Considering the time pressure in a RR, specific modes (eg, workshops, interviews) may be more beneficial for RRs with a few months or more timeline. On the other hand, for more urgent RRs conducted in less time, regular meetings and email communications or a short survey are probably easier to integrate into the process.

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Figure 1

Modes of involving knowledge users.

Other considerations when involving KUs in RRs

If undertaking RRs, there are other considerations that teams should bear in mind if involving KUs. As detailed in table 2, among these is ensuring all team members are prepared for collaboration by securing necessary resources,42 through skills development and practice of all team members, including KUs43 and in an equitable manner.44 45 It is also important to develop a KU engagement plan,46 especially if working within tight timelines, as it will ensure a clear understanding of mutual expectations throughout the RR. KUs may require resources and training (including an onboarding session) to participate meaningfully in the review process. Any additional training will likely need to be tailored to the needs of the individual KUs involved. Further, providing information on the policies and procedures, including a compensation policy, is important to show recognition and appreciation of patient and public partner contributions.47

Another consideration is the importance of highlighting the patient and public perspectives of the evidence as part of a RR report or summary, as this aims to bring these voices closer to that of health policy decision-makers. KU involvement in the RR process should also be reported in the methods section of the review so it is clear and transparent how they contributed to the process.48

Recognising any potential barriers KUs may experience and strategising solutions in advance to manage these is critical. Therefore, at the outset, RR teams are encouraged to discuss with KUs what could hinder their involvement. For example, because the time to conduct a RR is a potential barrier to meaningful KU involvement, consider developing KU partnerships before conducting a RR. Therefore, when the need to address a question of urgency arises, teams could approach KUs who may be interested in being involved at the ready. Although not possible to anticipate all barriers ahead of time, be proactive in monitoring for issues that arise at the outset and throughout the process and address issues swiftly so timelines are not hindered. Furthermore, ensure that the condensed RR timelines are communicated in advance, allowing KUs to determine if the time commitment works for them.

The feasibility of KU involvement will be based on many factors and will range from project to project. Although undertaking the full spectrum of KU involvement may be possible in certain circumstances, this is not expected for all RRs. For example, the rapidity and demands of completing a RR on time may necessitate involvement at the lower end of the spectrum rather than at the higher end with full involvement throughout the process. Varying degrees of involvement along the spectrum is not necessarily problematic. However, ideally, the aim should be to strive for involvement towards the higher end of the spectrum to the extent possible. Regardless, KU involvement needs to be planned, with clear objectives and purpose, to ensure it is meaningful and not just a token effort. Last, RR research teams must also evaluate KU involvement by gathering the perspectives of KUs and researchers. It will provide a more holistic assessment of the inclusion of KUs to ensure everyone involved learns from the experience, to ensure tokenism is avoided and that future KU processes are refined as needed. Various evaluation tools can be adapted for use with RRs.49–51 (See table 2 for additional details on these collective considerations).

Case examples

There are examples that illustrate iterative and collaborative multisectoral KU involvement processes in generating RR evidence to inform decision-making.52–54 These examples serve as a reference for researchers who wish to involve KUs and develop impactful research evidence rapidly. In particular, we showcase a Canadian initiative, through the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance, and in collaboration with the COVID-19 Evidence Network to Support Decision-Making, which mobilised meaningful involvement of patient partners and the public in developing COVID-19 RRs (see online supplemental file 1 for a brief description).54 Not all RRs, particularly in low-income and middle-income countries,55 will be adequately funded or resourced, thus making KU involvement less feasible. Nonetheless, this exemplar project is an example to learn from for planning and applying best practices for KU involvement in RRs.