Research Team Blog and Checklist

By Anna Samson, Chantale Thurston, Don Wood, Trinity Lowthian,
Dawn Richards and Perri Tutelman

Asking patient partners/people with lived experience to provide input on a draft manuscript: Things to consider and some guidance

We’re all aware that academic publishing is an important way for research teams to share research results. Sometimes your team includes patient partners (also called people with lived experience) who you might ask to review a manuscript before it’s submitted to a journal.

There are lots of reasons why lived perspectives about a manuscript are important – here are a few:

  • Getting feedback from all members of the research team who contributed to the work before a manuscript is published and made available is an important part of the research process.
  • Providing feedback is an opportunity to make sure that the research is presented in a way that is: patient-oriented, clear and easy to understand, and reflects the messages that are most important to patients. This helps to increase the chances that the work will actually help to advance future research and improve clinical practice down the road.
  • All feedback is important for a manuscript – no matter if it’s based on lived, scientific or medical expertise.

We’re a team that includes people with lived experience or patient partners, a researcher, and a person who facilitates patient engagement on research teams and initiatives. We’ve been part of research teams when a manuscript is circulated to the whole team without much more information than “please review and provide feedback.” For people immersed in the research environment, that instruction is probably enough.

However, we know that providing those with lived experience on the team with more guidance about reviewing a manuscript is helpful. It’s also useful for you to provide that guidance in advance of them needing to ask. Here are our thoughts on this in a checklist – you might choose to use a lot of these items in your request for feedback. You can download the checklist and use it in your own work or pass it on to others who might benefit from this information.

Click Here to Download Checklist

 

Things to consider when you make the ask

Logistics

  • Share with patient partners about how this task fits into a bigger picture - e.g., if you’re publishing a paper, what does the whole process look like (especially for people who are new to publishing)? You might include links to the resources above to help you with this. Provide clear instructions and offer to answer any questions they might have. Consider hosting a kick-off meeting to discuss and answer questions (note that this may need to be outside of business hours to accommodate patient partners)
  • Patient partners might want to provide feedback in different ways (e.g., written, verbal). Check in to see what their preference is and make accommodations as necessary.
  • Ensure that patient partners are familiar with the software or other technology you are using (e.g., Google Docs, track changes in Word, or if they are providing verbal feedback - how to use Zoom, Teams, etc.).
  • Keep in mind that not all patient partners will have subscriptions to Microsoft Office, and may not be familiar with track changes / commenting functions.
  • Will you be asking for multiple rounds of feedback? Let patient partners know.
  • Communicate and discuss estimated time commitments.
  • Timeline that you are asking for comments in
  • Make sure it's realistic and something that everyone is okay with. Adapt the timelines as needed.
  • Discuss timelines as early on as possible (how much notice/time do patient partners need?)
  • Are you providing appropriate compensation for time to complete the review? Be clear about what that is.
  • Are the patients okay with having their name listed as a co-author? Consider that this will publicly associate them with a certain illness group. Are there other ways to acknowledge their contributions if they do not want to be a co-author?
  • Patients may not be familiar with the publication or grant application process.

Content

  • Provide clear instructions of what you want them to focus on or not. For example - high level comments or grammar/typos/editing for clarity, comments on sections/the overall order of sections, etc.
  • Are there certain areas/sections that you would particularly like patients’ feedback on? Let them know!
  • Are you prepared to take the comments provided into consideration? If you decide not to incorporate comments, explain how you made that decision and why (i.e., your thought process, word limit constraints you’re working with)

 

If you’re interested in learning more generally about the publishing process when teams include patient/lived and living experiences perspectives on them, you can find more resources here:

  • A paper about the publishing process and how patient partners can meet the requirements for authorship
  • A video about how patient partners can be included on teams publishing a paper.

These resources might also be helpful in your email/verbal request to people about providing feedback on your manuscript. Good luck in your work together!