Patients and caregivers can impact research quality throughout the research process including research design, looking at the data, and dissemination of research.  Below we discuss the various ways they can have an impact in each area and how The Research Loop can help make that happen.

Design

a. Design

Research design can make or break a study’s success.  Some note that a main driver of research waste is the “poor engagement of end users of research” in design.1  Further, they point out that “new research is also too often wasteful because of inadequate attention to…important elements of study design.”1

The voice of patients and caregivers can improve design in various ways.  They can

  • ensure that design focuses on identified priorities that are relevant to patients;
  • check whether research questions and outcomes are clear;
  • point to inadequate descriptions;1,2,3
  • assess a study’s feasibility and barriers to recruitment;3,4,5
  • identify choice of methods for trials;3
  • help develop research tools including rewriting documents in more accessible language;3 and
  • help reveal any biases or assumptions researchers may have that could influence the research. 

b. Data, Analysis, and Interpretation

Traditionally, patients and caregivers have not had access to data sets and thus have been all but excluded from this aspect of the research process. Occasionally, researchers have asked patients and caregivers to assist with data collection or allow them to be part of a research team.  More often though, patients and caregivers are only seen as data points – a passive role – rather than active collaborators in this stage. 

Movements to compel researchers to share data with each other and with patients and caregivers are growing more and more each day. These efforts are in their infancy but have important backing from patient leaders who recognize the value patients and caregivers can add to research if data is available to them.

Even without fully published data sets, patients and caregivers can still engage in this part of the research process.  For instance, patients and caregivers can identify where the presentation of data in a paper is unclear.  According to researchers, “31% of all graphs published in the Journal of the American Medical Association in 1999 and 2000 could not be interpreted unambiguously because some features were not self-explanatory.”6  While this statistic may have changed over the years, many patients and caregivers find research daunting precisely because the data is not clearly presented.  Involvement by patients and caregivers in assessing the graphs can result in “reporting [that is] more meaningful and understandable for participants and the community.”7

According to INVOLVE, the patient and caregiver voice in analysis and interpretation can “help to identify themes that researchers might miss, help in checking the validity of the conclusions from a public perspective, and highlight findings that are more relevant to the public.” 8  In fact, researchers found, including patients and caregivers in analysis “resulted in an improved ability to contextualize conclusions…, added language and culture insight and highlighted [patients’ and caregivers’] priorities for a more focused analysis.”9  More importantly, patients and caregivers can point to the appropriateness of the analysis.

As with design and data, patient and caregiver engagement may include highlighting areas where the analysis may not be focused and concise, or spotting inconsistencies in interpretation.  Additionally, patients and caregivers might again identify researcher bias. Because researchers may be removed or isolated from the actual caregiver or patient experience, they may make certain assumptions that can lead to faulty interpretations.  Those with firsthand knowledge of these topics may be the only ones able to help correct some assumptions.  They may also be the best to explain and expand upon the implications of the research.10

Feedback on analysis and interpretation can influence researchers’ future studies by encouraging them to understand the patient and caregiver perspective for interpretation.  It may also spark interest in aspects of the research not previously considered.

c. Dissemination and Implementation

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.  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.3,9  These methods might be more efficient9 or leverage patient and caregiver-centered resources like social media, patient and caregiver networks8, accessible and trusted newsletters and media8, 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.7,8 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.11

Researchers have 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.”9  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.”4

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.12,13,14  It may also allow patients and caregivers to point out where there may be difficulties with implementation and help researchers adjust accordingly.37

How The Research Loop helps patients and caregivers make an impact

The Research Loop gives patients and caregivers a way to provide feedback on all areas of research including design, data, and dissemination. 

As discussed in a previous post, barriers to including patients and caregivers mean they are often not able to be on an initial design team before the research begins.  Yet, their critical eye patients and caregivers can retrospectively review the design of published research. With The Research Loop, patients and caregivers can offer feedback on the design choices made by researchers.  This feedback can push researchers to evaluate why they made certain design choices and how that might have affected their results.  The feedback can help researchers focus on priorities important to patients and caregivers and define better research questions.  Additionally, patients and caregivers can suggest design improvements or new directions.  In so doing, patients and caregivers can provide important input to shape future research studies.

Patients and caregivers offering feedback through The Research Loop can similarly comment on tables and graphs and the data available.  They can also comment on which statistical analysis methods the researcher chose and data points the researcher failed to include in their study.  For instance, a study that misses important demographic or socioeconomic data that could inform their findings and provide context.11 They can question what values the researcher deemed significant and encourage the researcher to consider future studies that takes these views into account.

With this feedback in hand, researchers can consider what data they will collect in future studies, what methods for data collection and statistical tests they may use, and develop outputs and graphs that are more accessible and relevant to the public.  Additionally, this feedback may give the research greater validity8,9,15,16 and applicability.7

Finally, 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.

You can make an impact!

If you want to provide feedback on research and impact design, data, and dissemination of research, make sure to register with The Research Loop!  Whether you’ve read research on your own, or you review one of the papers we’ve posted on our site, your feedback can make a difference!


For more on how patients’ and caregivers’ feedback can have an impact, including the concepts discussed above, see our White Paper, Section VI and Section VII.

References:

  1. Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. The Lancet. 2009;374(9683):86–9.
  2. Public Involvement in research: values and principles framework. INVOLVE: Eastleigh; 2015.
  3. Evans B, Bedson E, Bell P, Hutchings H, Lowes L, Rea D, et al. Involving service users in trials: developing a standard operating procedure. Trials. 2013;14.
  4. McKenzie A., Haines H. Consumer and Community Participation Fact Sheet Series, Second Edition. 2014.
  5. Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, et al. How to increase value and reduce waste when research priorities are set. The Lancet. 2014;383(9912):156–65.
  6. Glasziou P, Altman DG, Bossuyt P, Boutron I, Clarke M, Julious S, et al. Reducing waste from incomplete or unusable reports of biomedical research. The Lancet. 2014;383(9913):267–76.
  7. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Services Research. 2014;14(1).
  8. Briefing notes for researchers: public involvement in NHS, public health and social care research. INVOLVE: Eastleigh; 2012.
  9. Shippee ND, Garces JPD, Lopez GJP, Wang Z, Elraiyah TA, Nabhan M, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expectations. 2013Mar;18(5):1151–66.
  10. Chalmers I. What do I want from health research and researchers when I am a patient? BMJ. 1995May20;310(6990):1315–8.
  11. South A, Hanley B, Gafos M, Cromarty B, Stephens R, Sturgeon K, et al. Models and impact of patient and public involvement in studies carried out by the Medical Research Council Clinical Trials Unit at University College London: findings from ten case studies. Trials. 2016;17:376.
  12. Tong A, Crowe S, Chando S, Cass A, Chadban SJ, Chapman JR, et al. Research Priorities in CKD: Report of a National Workshop Conducted in Australia. American Journal of Kidney Diseases. 2015;66(2):212–22.
  13. Allard J, Durand C, Anthony SJ, Dumez V, Hartell D, Hébert M-J, et al. Perspectives of Patients, Caregivers and Researchers on Research Priorities in Donation and Transplantation in Canada. Transplantation Direct. 2017.
  14. The Impact of Public Involvement on Research. A discussion paper from the INVOLVE Evidence, Knowledge and Learning working group [Internet]. INVOLVE; 2012 [cited 2017Jun10]. Available from: http://www.invo.org.uk/wp-content/uploads/2012/07/EKLevidencediscussionpaperfinal170707.pdf
  15. Jinks C, Carter P, Rhodes C, Taylor R, Beech R, Dziedzic K, et al. Patient and public involvement in primary care research – an example of ensuring its sustainability. Research Involvement and Engagement. 2015;2(1).
  16. Tallon D, Chard J, Dieppe P. Relation between agendas of the research community and the research consumer. The Lancet. 2000Jun10;355(9220):2037–40.