The patient and caregiver voice in research is essential. Patients and caregivers have unique expertise from their lived experience in the healthcare system that can be used to transform research. However, patients and caregivers are rarely given the opportunity to contribute to research, their valuable voices are absent.
Patients and caregivers can improve research in a variety of ways starting with identifying better research priorities and improving relevancy research. Further, the patient and caregiver voice can enhance the quality of research by design, analysis, and interpretation. Once completed, patients and caregivers can assist with dissemination and implementation and add credibility to the research. Even with these growing initiatives, including the patient and caregiver voice remains limited.
While there are some initiatives around the world endeavoring to make the patient and caregiver voice a priority, they are limited. In the United States there is the Patient Centered Outcome Research Institute (PCORI).1 In the United Kingdom, there is INVOLVE2 and the James Lind Alliance (JLA).3 In Canada there is the Strategy for Patient-Oriented Research (SPOR)4 and Patients Canada.5 The National Health and Medical Research Council (NHMRC) is part of Australia’s efforts to involve patients and caregivers. The European Union has collaborated with the pharmaceutical industry to start the Innovative Medicines Initiative (IMI).6 And Norway has pursued efforts to involve patients and caregivers as well.7 The Research Loop recognizes the incredible work these organizations have already undertaken but also has identified where patients and caregivers are still left out.
The Research Loop is a web-based application developed that transforms the research process by adding the patient and caregiver voice in a new way. Through the website www.theresearchloop.com, patients and caregivers can submit feedback on published research articles which is then provided to the researchers. Researchers can choose to incorporate this feedback into their work and development of future projects. The Research Loop aims to improve research at all levels including priority setting, relevancy, quality, dissemination and completing the loop by filling the gap before new research begins. This innovative solution complements the initiatives above while empowering patients and caregivers as never before.
This paper will present the current need for The Research Loop. In the next section, the current linear research process is laid out, highlighting how the web-based application will transform this static trajectory with the patient and caregiver voice. Section III outlines how The Research Loop works. Section IV then discusses the traditional difficulties associated with finding and including patient and caregivers in the research process and how The Research Loop overcomes these obstacles to incorporate more voices. The importance of patient and caregiver involvement in priority setting is explored in Section V. The way in which patients and caregivers can impact quality, including design, data, analysis and interpretation are examined in Section VI. And in Section VII, the effect of including patients and caregivers can have on dissemination and implementation of research is discussed. Further justifications for including the patient and caregiver voice are explored in Section VIII, including that they add credibility to research, help increase public understanding of research, and moral arguments for their involvement. Throughout Sections V-VIII, the case is made for how The Research Loop’s platform will allow patients and caregivers to have a role in every stage of research and thus transform the research process. Section IX addresses issues of research waste and research funding, providing another justification for including patients and caregivers. Section X discusses principles to consider when including the patient voice – including respecting their expertise and accepting their voices as part of a multidisciplinary team. Section XI reviews some further barriers that often interfere with including the patient and caregiver voice such as researchers not recognizing their value, institutional support, tokenistic efforts, and more and how The Research Loop can help address these issues. Research motivations are discussed in Section XII followed by patient and caregiver motivations in Section XIII. In Section XIV, initiatives including patient engagement, open access, and data sharing reviewed including how The Research Loop aligns with each.
In developing The Research Loop, all of these aspects were given careful consideration so that feedback provided by patients and caregivers could have the maximum impact on research. The Research Loop itself will be an evolving project seeking to push for ever more engagement of patients and caregivers in unique and meaningful ways.
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