Researchers should work with patients and caregivers, not simply for them. Patients and caregivers should be considered experts, actively participating as consultants and collaborators as part of a multidisciplinary team at all stages of the research process. The Research Loop allows patients and caregivers to become part of a team by providing feedback through the site.
a. With not For
A fundamental concept of including patients and caregivers is orienting researchers to understand that “Instead of undertaking research on or about patients, research is undertaken jointly with them.”37 In other words, research should be “carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for. them.”43 Most research is beneficently undertaken by researchers for patients and caregivers. However, as discussed above by inviting patients and caregivers to work with researchers, better research priorities can be selected, higher quality research can be undertaken, and a greater impact made by the completed project.
b. As Experts
As part of a team, researchers must first recognize the expertise patients and caregivers have through their lived experiences within the health system and as individuals with diverse backgrounds including various forms of education (both formal and informal) and work-related experience. Given this diversity, all forms of knowledge must be respected and valued, qualifying patients and caregivers as, in the least, experiential experts. This however “requires a recognition that knowledge is produced in arenas other than academia.”37
In the past such “Experience-based experts have…been excluded from knowledge sharing and decision making because their knowledge has been seen as inferior to certified expertise.”41 Many researchers and institutions continue to question whether patients and caregivers without the same certifications as researchers can truly offer much to research. But as Shippee et al. noted, patients’ and caregivers’ “abilities should not be undervalued: challenges such as serious mental illness or lack of resources in developing countries have not prevented [them] from understanding research foundations, giving feedback and strengthening research.”15
Chalmers reminds us that “No one – and certainly not researchers – can claim a monopoly of relevant wisdom in discussions about what deserves attention in health research. Lay people can draw on kinds of knowledge and perspectives that differ from those of professional researchers.”35 Thus, when involving patients and caregivers in research, Evans points out “Service users should have equal status with other research team members for the expertise they bring; all team members’ views should receive equal consideration.”33
The Research Loop recognizes the power of patient and caregiver expertise and works to elevate their voices to transform the research process. While researchers will ultimately decide whether to accept the feedback offered by patients and caregivers, The Research Loop echoes INVOLVE in urging researchers to remember: “Members of the public might have personal knowledge and experience of your research topic or be able to provide a more general perspective. Even if you are an expert in your field, your knowledge and experience will be different to the experience of someone who is using the service or living with a health condition.” 12 Accordingly, The Research Loop hopes that researchers will also recognize the expertise of patients and caregivers and include their voice in the research process.
c. As active participants
In the past, patients and caregivers have merely been “passive subjects” of research22, essentially only as data points.9 However, there is increasing recognition that they should be “active partners” in research.10,39 Such active participation recognizes the value of the patient and caregiver voice, including their expertise as consultants and collaborators and acknowledges that involvement of patients and caregivers should not be tokenistic (as further discussed below). It also encourages patients and caregivers to propel research forward.
The Research Loop ensures that patients and caregivers can be active participants. Section IV demonstrated how patients and caregivers are often left out of the research process all together given the obstacles that in-person meetings pose. The Research Loop solves many of these issues so that patients and caregivers are given a voice that can truly impact research at all stages.
d. As consultants and collaborators
Patients and caregivers may be asked to participate at varying levels of involvement and engagement – from passive participants in research, to consultants, to collaborators. Consulting and collaboration allow patients and caregivers to bring their expertise to the table to influence various stages of research. Ideally, patients and caregivers should be collaborators with researchers, making decisions together. Short of that, having patients and caregivers act as consultants whose input researchers look to when making decisions is of great importance.44
The Research Loop allows patients and caregivers to act as consultants. As The Research Loop develops, there is promise in developing relationships between researchers and patients and caregivers that might lead to more collaborative partnerships. Currently, by providing feedback, patients and caregivers can offer their expertise as active participants on a research team.
e. As part of multidisciplinary team
Given patients’ and caregivers’ expertise, their input can be viewed as part of engagement on a multidisciplinary team. As Natland et al. point out, including patients and caregivers in the research process takes them “From being an object of research, the patient can now become a co-researcher in a team that jointly formulates the goals and methods of the research project.”37 An approach that they say “emphasizes interdisciplinary, collaboration and a given context.”37 This kind of collaboration is increasingly encouraged. In fact, to increase value and reduce waste, Chalmers et al. say it is important to encourage researchers “to work across traditional academic boundaries can lead to creative sharing of ideas…” and recognize the importance of multidisciplinary teams.23
Patients and caregivers using The Research Loop platform can be seen as adjuncts to a research team. The feedback they offer will hopefully drive researchers to see beyond those “traditional academic boundaries” by introducing them to new viewpoints. This expert feedback can help shape future research just like feedback any co-researcher developing a study.
f. At all stages of the research process
Patients and caregivers should be involved in all stages of research including priority setting, research design, data collection, analysis, interpretation, dissemination and implementation to have the greatest impact.33 Many emphasize the importance of involving patients and caregivers at the earliest stages of research development. In that way, patients and caregivers can perhaps have the greatest impact. However, as INVOLVE states, “it’s not too late to involve people” at any stage of research12 and, as demonstrated above, patients and caregivers can provide valuable input at all stages.45
The Research Loop gives patients and caregivers the opportunity to impact all stages of research by providing a platform to let them comment on all aspects of research. Patients and caregivers are specifically asked to provide input on design, analysis, and impact. Additionally, through educational materials posted on the site, patients and caregivers can learn more about research and other efforts to involve patients and caregivers in research. These resources can help increase the ability for patients and caregivers to understand and comment on all aspects of research.
Not only does The Research Loop allow patients and caregivers to offer feedback for all stages of research, The Research Loop presents this information at the earliest stage of research – before future projects are conducted. The feedback, as discussed above, can impact the very first stage of priority setting. Ultimately The Research Loop fills the gap between the end of a research study and the beginning of the next, transforming the linear research process into a perpetuating research loop.
To download a full copy of The Research Loop White Paper or find links to other sections, including the reference section, click here.