There are a plethora of justifications for including patients and caregivers in research beyond improving research quality, dissemination, and implementation. These justifications include increasing the credibility of research, increasing public understanding of research, and moral arguments for including the patient and caregiver voice.
Including the patient and caregiver voice in research can enhance the research’s credibility, which imbues a sense of legitimacy and authority in the research as well.9,11,12,36 This credibility and authority ultimately has the effect of increasing public confidence in the research22,26 and perhaps even increase the uptake and application of the findings. 11
Feedback from The Research Loop can lend credibility to researchers’ work outright by confirming aspects of the study, giving researchers a sense of authority as they propose new projects. It can also lend credibility to researchers who take the information to learn from errors in past studies and apply it to future studies and in so doing increase public confidence in any new findings.
b. Increased Understanding of Research
Inviting patients and caregivers to become involved in research has the effect of enhancing public understanding of research.11,33 Being part of the research process and learning how each stage is developed and conducted can give patients and caregivers insight into a field that they have been traditionally excluded from.
The Research Loop expects to be a source of education for patients and caregivers to help them understand research and thus be able to more actively engage with research. Several educational materials will be posted on the site along with links to resources where patients and caregivers can learn more.
c. Moral Arguments
Moral arguments for including patients and caregivers in research include ideas of accountability, democracy, fairness and justice, and equity. The Research Loop believes patients and caregivers have a right to be involved in research and to hold researchers and institutions accountable for any public funds used for research as discussed in the next sections.
i. Democratic Right
The World Health Organization’s Declaration of Alma-Ata states that “people have the right and the duty to participate individually and collectively in the planning and implementation of their healthcare.”38 This may be reasonably expanded to the research that affects their healthcare.
In fact, this concept is central to INVOLVE’s philosophy of patient and caregiver engagement. INVOLVE states that “Public involvement in research is founded on the core ethical principle that people who are affected by research should have a righto have a say in what and how research is undertaken.”36 They further describe such involvement as “an intrinsic part of citizenship.” 12
Ideas of fairness and justice further support this notion that patients and caregivers have a right to be involved in research.35,39 As Dr. Andreas Laupacis said, “Fairness and justice would say these people have got the disease … surely they should have a bit of a say.”21 As SPOR succinctly states, “It is our health…It is our system…”19
ii. Accountability, Transparency, and Stewardship of Public Funds
One of the most persuasive moral arguments for involving patients and caregivers in research is accountability and transparency, particularly of research funded by the public.14,33 More specifically, the idea that “the public, as taxpayers, have the right to be actively involved in any publicly funded research that may impact on their health or the services that they receive.”27 As Oliver et al. writes, this is one of the main reasons for researchers to involve patients and caregivers. They argue that “More transparent governance of public resources is part of public accountability and participatory democracy.”40
Researchers must be held accountable for the funds they receive from tax payers and they must as well as funds from non-profit organizations as those funds come from monies entrusted to non-profit organizations by the public.33,41 Researchers must justify the funding they receive is being well spent and be held accountable as stewards of these funds.
Patients and caregivers both have a right to participate in research and a duty to hold accountable researchers. However, many of them not been able to exercise that right or fulfill their duties because they are not given the opportunity to participate in research. By presenting a new way to include the patient and caregiver voice, The Research Loop can help with the realization of that right for all individuals and can continue to scrutinize the use of funds disbursed to researchers.
To download a full copy of The Research Loop White Paper or find links to other sections, including the reference section, click here.