The value of a research study cannot be realized until the results are disseminated and implemented. Yet dissemination of research is often inadequate and restricted.22 Most patients and caregivers are unaware of research unless it is highlighted by media outlets or they specifically search for it. And even when found, research published in articles that are behind paywalls becomes inaccessible to the wider public. Thus, the public relies on media reports that may sensationalize findings or must put significant effort into seeking out research on their own.
Involving patients and caregivers in research can improve the dissemination of research studies to the public in several ways. First, patients and caregivers may know of more creative dissemination methods.15,33 These methods might be more efficient15 or leverage patient and caregiver-centered resources like social media, patient and caregiver networks12, accessible and trusted newsletters and media12, and patient and caregiver forums. Second, if patients and caregivers were involved in other aspects of the study such as analysis and interpretation, the findings may be easier to understand and thus dissemination becomes more meaningful as the information is clearer for all audiences.9,12 And third, patients and caregivers themselves can communicate the findings, thus no longer needing interpretation from media or researchers who are disconnected from patient and caregiver communities.14
As Shippee noted, “adequate dissemination has proven to be helpful for future implementation, and making results known within several strata may facilitate obtaining resources and funding for implementation.”15 With this, as part of dissemination efforts patients and caregivers can be part of dissemination by “lobby[ing] to ensure that changes are made and research is more widely applied.”10
Implementation can only be effective if the end-users of the research have both access to the research and can interpret and apply the findings. Researchers may also note that patients and caregivers themselves, as end-users, will be the ones implementing the findings individually or with other healthcare providers. Involving them in the research process at various stages will facilitate and possibly accelerate implementation as the research may have more meaning, may be more relevant, or may be more easily understood.16,26,36 It may also allow patients and caregivers to point out where there may be difficulties with implementation and help researchers adjust accordingly.37
The Research Loop can be a useful tool for researchers to understand how their studies are disseminated and implemented. The Research Loop feedback form asks patients and caregivers to self-report where they encountered the research and how it affects them. This information may help researchers find areas where dissemination efforts are working and where they can improve. It can also indicate how the findings might be implemented or where there are issues with implementation and translation of the findings into practice.
In its current form, The Research Loop cannot disseminate research directly but does point patients and caregivers to resources where they can search for articles that might interest them. The site will also use social media and other patient and caregiver forums to disseminate research from time to time as appropriate.
Additionally, The Research Loop will join efforts to push for open access to all research and will facilitate open access to the extent possible. The Research Loop believes the feedback provided through the site can impact open access by proving to researchers and institutions the value of the patient and caregiver voice when patients and caregivers have the opportunity to read research that is not locked behind paywalls.
To download a full copy of The Research Loop White Paper or find links to other sections, including the reference section, click here.