Patient Understandings of Evidence and Therapeutic Effectiveness

Abstract

Increasingly the second wave of EBHC has emphasised patient perspectives, evidence-based patient choice and evidence-based patient care. At least at the level of policy and representation, there has been a movement away from an emphasis on distanced cohort data with increased attention given to the applicability of data for individual patients and clinical contexts. Despite this, as Holmes and O'Byme emphasise in Chapter 3, EBM and EBP have remained reliant on epidemiological data and reductive approaches to care regardless of linguistic and rhetorical shifts. It is for this reason that we place this chapter in Part 111 ('Evidence on the Margins') rather than in Part II ('Evidence in the Clinic'). Whilst this is perhaps slightly provocative -there is some penetration of patient views on evidence into clinical environments -patient understandings of what constitutes effectiveness have been consistently marginalised. As shown in the data presented below, while patient perspectives are continuing to shape clinical work and clinical practices, they often vary significantly from those of biomedical clinicians and EBMfEBP advocates. A refocusing on what patients themselves understand as evidence becomes an inevitable conclusion. In this chapter we ask British patients themselves 'what is evidence?' and in a particularly controversial context: the use of complementary and alternative medicine (CAM) in the context of cancer. There is perhaps no more divisive a public and academic debate than that of the use of CAM in the treatment of cancer and such debates tend to feature those operating at the extremes of the 'evidence debate' (that is, those espousing meta-analysis of clinical trials versus those who treat on the basis of individual need). This very public debate has largelyfocusedon the'lackofproof'discourseespousedbyCAM scepticsrather than the'lack of a need for proof' discourse of CAM advocates. While there are stakeholders pursuing a more nuanced position, there has been little movement in the area of CAM and cancer in terms of health policy or health delivery in the UK. Most CAM use for cancer is private, making it a fascinating case study of patient decision making taking place outside conventional medicine facilities and involving considerations around what works and what constitutes evidence of effectiveness.