What Are the Best Practices for Co-Creating Patient-Facing Educational Materials? A Scoping Review of the Literature

Round 1

Reviewer 1 Report

Co-creation of patient-facing educational materials aims to respond to patient priorities and unmet -needs, thus, promoting patient-centered care. Therefore, some patient reported experiences/ patient reported outcomes (measurements that come directly from the patient, reflecting their own perception or feeling regarding the disease or treatment) could be reflected ….. future study directions should explore the relevance of it in co-creating patient-facing educational materials.

Author Response

We thank the Reviewer for drawing attention to the importance of patient experiences in developing patient-reported outcome measure (PROMs). We have incorporated this important point in the Discussion of the revised manuscript: Co-creation draws on patient perceptions and experiences of their condition, care, and treatment. The development of patient-reported outcome measures (PROMs)  typically utilizes qualitative data from patients to define key constructs and enhance  content validity when creating PROMs [62]. As such, future directions could employ co-creation to develop PROMs“ (page 8, lines 300-304).

Reviewer 2 Report

 

I am not convinced by the fact that co-creation is considered-evaluated from a general perspective. Prefer that a specific pathology or a range of patients was chosen. In this way it would be possible to evaluate co-creation in detail, also being able to provide tools to implement it. The entire discussion, without this narrowing of the investigation, remains vague. The same applies to patients: taking a range of patients helps us to better understand certain difficulties: let's take the case of immigrant patients. Through this choice we can focus on the communication difficulties between patients and hospital staff. Without this narrowing of the investigation, this article remains in effect a review of the literature.

Author Response

The Reviewer makes a valid point that this scoping review did not focus on the use of co-creation within a specific pathologic condition. We appreciate the opportunity to clarify this point. Our rationale for not focusing exclusively on a specific health condition or patient population is that co-creation is a relatively new concept with a limited number of studies – indeed, we only identified 44 articles published between 2007-2022.

The Reviewer’s comment “Without this narrowing of the investigation, this article remains in effect a review of the literature” is correct. Respectfully, a scoping review is a form of literature review (Grant et al., A typology of reviews: an analysis of 14 review types and associated methodologies, Health information and Libraries Journal, 2009). As noted in the Introduction: “The purpose of this scoping review was to address the primary question “what is known about co-creating patient-facing educational materials (PEM) with patients and/or families?”. We aimed to synthesize findings from the existing literature to identify ‘best practices’ that could serve as a roadmap to improve co-creation of PEMs”. Given the paucity of literature on the best practices guiding co-creation of PEMS, we utilized a scoping review to identify aspects that were shared across the published literature (regardless of health condition or patient population) to distill the practices that could guide clinicians and investigators in co-creating high-quality PEMs. We feel that by employing a systematic approach (i.e., scoping review) following a well-established methodology (i.e., Arskey & O’Malley framework) that we could advance the field by identifying ‘best practices with broad applicability.

Reviewer 3 Report

Dear Respectable Authors

Thank you for considering a great area of research related to Co-creating patient-facing educational materials  (PEMs). As you stated PEMs can enhance person-centered care by responding to patient priorities and unmet needs, then, It is very important to pay attention to this issue and find the best practice in this field. You applied a proper methodology for capturing the data regarding your aim of the study. In the following, I have made some comments about the way of reporting the method and results to improve the quality of your article, which I hope will be useful. 

- Abstract, Please add more details. Based on PRISMA ScR, please provide a structured summary that includes (as applicable): the background, objectives, eligibility criteria, sources of evidence, charting methods, results, and conclusions that relate to the review questions and objectives. Also, you can benefit from the PRISMA extension for Abstract. 

- Section 2.2, If you have not used any restrictions such as language or time in the search, please mention it.

- Discussion section is low. Please discuss all your results with other related studies in this field. If the number of literature in this field is low, please mention it as a limitation. 

- Please mention at least six paragraphs in each you discuss one of the six practices identified in your study. 

Cheers

 

Author Response

We appreciate the Reviewer’s positive remarks.

Abstract: We thank the Reviewer for the constructive comments to improve the abstract. The journal requires an unstructured abstract limited to 200 words. We have followed the PRISMA extension for abstracts and added specific statements specifying the framework we followed, the databases searched, inclusion/exclusion criteria, and risk of bias. The revised abstract is now 233 words and we are hopeful that the journal will accept this overage so that we can closely adhere to the PRISMA extension.

Section 2.2: Per the Reviewer’s suggestion we have added: “No language restrictions were placed on retrieving published articles” (revised manuscript - page 2, line 81).

Discussion: the Reviewer makes a valid point that there are limited articles reporting on the co-creation of patient-facing educational materials. To address the Reviewer’s comment, we have added the following to the revised manuscript in section 4.1 Strengths and Limitations: “This study has several limitations. First, our scoping review only identified 44 published articles (2007-2022) reporting on the co-creation of PEMs. We distilled ‘best practices’ across the 44 studies regardless of health condition or patient population. Having a larger body of published literature to draw from would have strengthened our process in identifying best practices” (page 8, lines 325-329).  

Six best practices: We that the Reviewer for this helpful suggestion. We have edited the revised manuscript to ensure that each of the six identified best practices has a dedicated paragraph. We feel this change will help the reader better follow the Discussion.

Reviewer 4 Report

Dear Authors,

This is well-conducted review of a relatively new concept, co-creation of PEMs. You have filled a void in the literature by conducting your thorough scoping review and synthesizing six best-practices.  The addition of the patient advocate to validate the best practices adds merit to your paper.  I have only one suggestion that I offer as a consideration to enhance the paper.  This concerns your best practice #5, Empower: patients have the final say.  In section 3.4, line 188-189, you state that three studies (of the 44 studies in the cohort) underscored that patients should have the "final say"; and based on these 3 studies, you have inserted a best practice.  However, 41/44 studies did not mention this factor.  As a reader, this struck me as an outlier in your data in terms of having significant evidence in the reviewed studies to back your contention. For your other 5 best practices, there were many more studies that identified the parameter (e.g., 10/44 studies did not employ an evaluation method (best practice #6); 14/44 studies did not use a guiding framework (best practice #2), etc. While I don't disagree with you inserting best practice #5, I  think you can make a better case for its inclusion by expounding upon this item in your discussion.  For instance, in 3.5, line 194,  you identify attributes of high-quality PEMs (i.e., understandable, acceptable ,and actionable).  Who better to adjudicate whether the PEMs is high quality than the patient, having the final say? Additionally, in discussion lines 240-244, you add important perspective and feedback from your patient advocate concerning the value of patient partnership; this could be folded in to your rationale for including Empower/patient final say as #5.  Further, lines 282-285 are keenly important statements concerning need for empathy /shared governance, and lend further credence to including #5 as one of your best practices - you can fold these considerations into your rationale. Lastly, in your stated limitations, lines 300-303, you state that you excluded studies that only involved patients at the end of the study; it is possible that those studies, when they inserted the patient at the end of the study, actually found that the patient had the final say and provided valuable feedback that was incorporated into the PEMs in the study (in essence, they employed your best practice #5).  While I do not suggest you change your methodology and include those studies, you could hypothesize (or actually confirm by looking at these excluded studies), that the N of 3 would actually have been higher if these studies were included - meaning some of these excluded studies also found value in having the patient have the final say.  In summary, perhaps you can use these suggestions to better support your decision to add #5 empower/patient last say in your conclusions.  

Author Response

We thank the reviewer for their positive remarks and for their appreciation of including our patient advocate co-author in this process. We greatly appreciate the Reviewer’s careful reading of our manuscript and for the detailed, constructive, and highly useful suggestions. This Reviewer’s thoughtful and critical insights reflect what we consider to be high-quality peer-review – thank you!

We have modified the Discussion to address the Reviewer’s points: “Fifth, the notion of empowering patients to have the final say on PEMs additionally supports the patient-centeredness of co-creation. It merits noting that among the identified ‘best practices’, empowering patients to have the final say was only noted as an author-identified strength in three of the 44 identified articles. The modest number supporting articles may be an artifact of our selection process - as 12 studies were excluded (Figure 1) for not meeting our definition of the co-creation process (i.e., involving patients from the beginning). The excluded studies used patients as a final validation step to approve the PEMs created by clinicians/investigators. Thus, excluded studies may provide indirect support for the importance of empowering patients to have the final say. Second, patients are experts in their condition and are in the ideal position to determine if PEMs are understandable, acceptable, and actionable (i.e., high-quality). Valuing patients/families as equal partners in finding solutions by creating space for their perspectives and opinions helps ensure that PEMs are grounded in patient priorities [55]. As noted by the patient advocate involved in this study, partnering with patients/families as equals helps support the relevance and acceptability of co-created PEMs. Involving the patient advocate in this scoping review provided key stakeholder support for including patient empowerment as a ‘best practice’.” (revised manuscript - page 7, lines 255-271).

Round 2

Reviewer 2 Report

I think the implementations of the text make it more scientifically grounded. I think it can now be published.