a. Patient Engagement Organizations and Patient-Centeredness

The Research Loop aligns and supports several other initiatives in health policy around research.  As an innovative solution, The Research Loop will enhance the efforts of organizations previously mentioned such as INVOLVE, JLA, NHMRC, PCORI, SPOR, and others focused on involving patients and caregivers in research.  These organizations seek to include patients and caregivers at all stages of research.  As of yet, these organizations do not have a way to remotely include patients and caregivers outside the traditional, linear research process.  The Research Loop closes the gap these organizations leave and in so doing, hopes to enhance their efforts.

b. Open Access

Currently, most research is locked behind paywalls.  Articles and journal subscriptions are too expensive – leaving most patients and caregivers without access to research.  However, more and more patients and caregivers are demanding that research be open access.  They rightfully assert that because a lot of research is funded by taxpayer money or contributions to charitable organizations, the public has a right to the research produced.  Furthermore, they make the reasonable argument that research is less useful if it cannot be read by everyone, particularly end-users.

The Research Loop cannot provide patients or caregivers with access to research articles.  The site lists resources pointing patients and caregivers to places to find research articles.  However, The Research Loop will support aims to push for open access to all research and expects to add to those efforts.  If researchers, institutions, and funders realize the impact the patient and caregiver voice can have in research, they will want to have more patient and caregiver feedback.  To have more feedback, they will need to make the research more available. Thus, the feedback offered through The Research Loop can be the proof these individuals and entities need to support open access.

c. Data sharing

As discussed previously, recent movements have pushed for researchers to release data and make it publicly available to all.  These measures are largely resisted by the research industry for various reasons.  However, patients and caregivers make a compelling argument that releasing the data is almost a moral imperative, noting that the data is in fact about and from patients and caregivers and thus they have a right to that data.  They also argue that releasing the data will increase transparency so any errors may be discovered, producing more accountability and greater accuracy.  In finding errors, researchers may be able to identify where research failed and improve future research.  Furthermore, patients and caregivers argue that sharing data will spur research efforts, leading to more innovation and discoveries rather than letting data languish in isolated repositories.

The Research Loop will support data sharing as it supports open access.  By releasing data, patients and caregivers can take a bigger role in research, as collaborators and perhaps even initiators of research.  Additionally, greater transparency will produce better research in line with the goals of The Research Loop which aims to improve all research.

To download a full copy of The Research Loop White Paper or find links to other sections, including the reference section, click here.