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Addressing Deficits and Injustices: The Potential Epistemic Contributions of Patients to Research

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Abstract

Patient or public involvement (PPI) in health research is increasingly expected as a matter of policy. In theory, PPI can contribute both to the epistemic aims intrinsic to research (generating knowledge), and to extrinsically valued features of research such as social inclusion and transparency. In practice, the aims of PPI have not always been clear, although there has been a tendency to encourage the involvement of so-called ordinary people who are regarded as representative of an assumed patient perspective. In this paper we focus on the epistemic potential of PPI, using theoretical work in epistemology to develop a nuanced account of patients’ experiential knowledge and how this might contribute directly to conceptual development, hypothesis generation and data interpretation. We also consider how some features of health research pose barriers to this kind of epistemic contribution. Drawing on Miranda Fricker’s idea of testimonial injustice, we explore how disciplinary indicators of credibility in clinical and academic health research contexts might be wrongly applied to those involved in PPI, undermining their potential to contribute. Finally we argue for a range of strategies to maximize opportunities for patients to engage with research teams and make epistemologically significant contributions to research.

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Notes

  1. Systematic reviews of PPI show little or inconclusive evidence of the impact of PPI [3, 5, 6, 12, 43].

  2. Elsewhere in the literature [50] authors distinguish ethical, political, and methodological aims. Of these, the first two fit into our ‘extrinsic’ category, whereas the third fits our ‘intrinsic’ category. Similar distinctions have been made by others, e.g. [9]. p. 2576; [49]. p. 2. It is worth noting that some benefits fall into a grey area. For example, involvement of patients in research design with the aim of improving the experience of the research participants by ensuring that their experience is pleasant, not inadvertently undermining of dignity, not too difficult etc. obviously has extrinsic value (i.e. ethical value of improving the experience of participants) but might also impact on comprehensiveness of data collection by increasing the number of respondents or completers, or improving the accuracy or richness of what they say. Conversely, there are moral reasons for promoting the epistemic benefits of PPI (for example doing so will lead to better utilization of health resources) and, as we will discuss, moral or ethical issues can arise in relation to the pursuit of PPI for epistemic aims.

  3. Examples of such indirect benefits are reported in [24].

  4. We recognize concerns expressed elsewhere that the term ‘patient’ can suggest sickness, passivity and disempowerment [5], although the term is claimed by some patient activists. We prefer ‘patient’ to ‘consumer’, which seems to refer more broadly to someone who is or might be a user of various health-related services, and is also suggestive of a particular kind of (economic) relationship (a point made by Angus Dawson [14]).

  5. Groups with other perspectives (such as carers or clinicians) might also have unique forms of knowledge that could enhance the conceptualization, design and conduct of health research. Such questions lie beyond the scope of this paper, but some of our arguments, relevantly modified, might apply to other groups.

  6. This terminology is courtesy of Donald Rumsfeld, who said: “There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know.” As David Logan observes [27], Rumsfeld’s comments gesture towards an idea that is useful in the context of scientific knowledge.

  7. Although we note that there is ongoing controversy over whether or not GWS is caused by an unknown medical problem (for example related to immune function) or whether it is psychogenic [22].

  8. Gronseth [22] reports that some veterans wore pet flea collars to repel insects.

  9. Chalmers does not reference this claim, therefore we are unable to provide further details.

  10. For example, one biomedical scientist said: “Patients should not interfere in processes of which they know nothing about.” [9 p. 2576].

  11. For example, Thompson et al. quote a patient involved as a research collaborator as saying: “You need to put brain into gear before opening mouth. You can’t just sit and waffle… [health researchers don’t] suffer fools gladly” [47 p. 613].

  12. The Project LEAD® institute also provides intensive science course for breast cancer advocates in the USA [42].

  13. Some forms of indirect epistemic contribution may benefit from those involved in a PPI capacity lacking technical knowledge or skills, for example the ability to identify that ordinary patients will not understand an information sheet due to jargon, or sensitivity to how those with limited understanding of research will react to various recruitment protocols.

  14. The website of Harvard’s “Project Implicit” includes such resources for combating implicit bias generally, although the details are not specific to implicit biases in the health research context [36].

  15. The possibility of using focus groups suggests a related but less direct way that patients’ first-hand knowledge of their health conditions might lead to epistemic breakthroughs. That is, when researchers make detailed use of qualitative studies of patient experiences. Careful analysis of already articulated patient experiential knowledge might stimulate new ideas when considered by researchers in light of their existing knowledge and research questions. Although not strictly a case of patient involvement, this is worth noting here because it seems a natural extension of our account of the role of experiential knowledge in achieving the epistemic goals of health research. Further examination of the potential of forms of qualitative research such as in-depth interviews and focus groups seems warranted. This point reinforces earlier recommendations along these lines [18].

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Acknowledgments

The research for this paper was primarily funded by an Australian Research Council (ARC) grant (DP120101092), How do we know what works? Ethics and evidence in surgical research. Katrina Hutchison’s research was also partly funded by the ARC Centre of Excellence for Electromaterials Science, where she has worked since June 2015. Discussions about the paper were facilitated by Macquarie University funding of a visit by Vikki A. Entwistle to participate in a Centre for Agency, Values and Ethics (CAVE) seminar on Capabilities Approaches to Justice. The authors would like to thank the anonymous reviewers for a number of helpful comments.

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Authors and Affiliations

  1. School of Philosophical, Historical and International Studies, Monash University, Menzies Building, 20 Chancellors Walk, Wellington Road, Clayton, VIC, 3800, Australia

    Katrina Hutchison

  2. Department of Philosophy and Department of Clinical Medicine, Macquarie University, Sydney, NSW, 2109, Australia

    Wendy Rogers

  3. Health Services Research Unit, University of Aberdeen, Health Sciences Building, Foresterhill, Aberdeen, AB25 2ZD, UK

    Vikki A. Entwistle

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  1. Katrina Hutchison
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Correspondence to Katrina Hutchison.

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Hutchison, K., Rogers, W. & Entwistle, V.A. Addressing Deficits and Injustices: The Potential Epistemic Contributions of Patients to Research. Health Care Anal 25, 386–403 (2017). https://doi.org/10.1007/s10728-016-0323-5

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