Exploring the impact of providing evidence-based medicine training to service users

EBM: definition and origin

David Sackett proposed what is now a widely accepted definition of evidence-based medicine (EBM). “Evidence based medicine is the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients” [1]. Sackett goes on to elaborate on the three cornerstones of EBM: individual clinical expertise, best available clinical evidence and individual patients’ situations, rights and preferences.

The birth of the modern EBM movement can be traced to Archie Cochrane’s publication of Effectiveness and Efficiency: Random Reflections on Health Services in the early 1970s [2]. Here, Cochrane set out his belief that healthcare should be based on treatments shown to be effective by research evidence [3]. Throughout the 1980s, a McMaster University team, including Sackett, worked to develop a practical method to apply the principles of clinical epidemiology to the delivery of healthcare [4]. To develop and research these methods further, the Cochrane Centre was established in the UK in 1992. At the same time, a seminal article on EBM was published in JAMA which described EBM as a new paradigm for medical practice [5]. The first article to describe the steps involved in the method behind EBM was also published in 1992 and was very specific in the advice it gave to clinicians [6]. Since then, EBM has enjoyed a rapid growth of influence, for example, via incorporation into medical curricula, and has been brought to public attention through popular publications such as Ben Goldacre’s Bad Science [7].

Critical view of EBM

Despite this success, EBM has been, from its inception, the subject of heated debate [8]. Critics of EBM have cited numerous limitations. A review undertaken by Cohen et al. categorised these criticisms and limitations into the following five themes: reliance on empiricism, narrow definition of evidence which excludes important information, EBM itself is not evidence-based, limited usefulness for individual patients and threats to the autonomy of the doctor/patient relationship [9]. More extreme criticisms have included describing it as the work of a cult or fascists [10, 11].

PPI: definition and origin

INVOLVE, the organisation that supports public involvement in the National Health Service (NHS), defines public involvement in research as research being carried out “with” or “by” members of the public rather than “to”, “about” or “for” them [12]. The 1990s were marked by an increasing interest in patient and public involvement (PPI) within the Department of Health and the NHS [13]. These developments may be seen as a response to three major factors: public response to a series of NHS scandals, public demands for a greater voice in decisions about the services they receive and demands from politicians for greater efficiency and effectiveness in the use of public funds and increased quality of services [14, 15]. The Kennedy report in particular made a strong argument for greater public involvement in the delivery of health services. Although the involvement of service users originated in the provision of services, it has spread into health research, and today, many funders including the National Institute for Health Research (NIHR) require user involvement in grant proposals [16].

However, evidence-based medicine as a concept has largely been ignored by the PPI in the health research community. Those within the PPI in the research community who have engaged with EBM have largely been critical. The common thread of this criticism is that EBM does not account for the individual needs and concerns of the patient. For Faulkner and Thomas, EBM reduces a patient to “little more than a disease being treated” and is ethically problematic [17]. Glasby and Beresford, whilst acknowledging that evidence-based practice is valuable in principle, are very wary of what constitutes “evidence” in EBM. They criticise EBM for its emphasis on the importance of systematic reviews. They state that the dominance of systematic review evidence, which traditionally synthesises randomised controlled trials, marginalises the views and experiences of those who use health services [18].

The knowledgeable patient: EBM and PPI

Despite these criticisms, EBM has been promoted by some as a vital tool to aid patient empowerment. Bero and Jadad made a case for systematic reviews to inform the decisions made by consumers and policy makers and, as early as 1997, argued that consumers should be involved in the production of reviews [19]. Others have argued that a better understanding of EBM by consumers could promote a more realistic understanding of the effectiveness of treatments [20], raise awareness about variation in practice [21], empower the public in their interactions with healthcare professionals [22] and aid participation in decision making related to research [23]. It has also been suggested that consumer demand for EBM could act as “bottom-up” approach to prompting the adoption of evidence-based medicine by health professionals [20, 24]. Far from marginalising patient views, Domenighetti suggests that EBM, “leads to more autonomy and freedom for the individual”. Sackett, one of the originators of modern EBM practice, goes further, stating that “evidence based patient choice empowers patients and saves their lives” [21].

There are very few reports of approaches and methods of providing EBM to non-health professional audiences. Those few papers that discuss public engagement with EBM generally discuss the concept from a theoretical stance and are vague about the practical details. Suggestions also tend to focus on particular issues, for example, producing leaflets about the efficacy and safety of ultrasonography during pregnancy or mass media campaigns about specific concerns such as prevalence of hysterectomy [19, 20]. This form of engagement with research is passive and instrumental and does not afford an individual the kind of empowerment described by Sackett [21]. The authors found only a few reported attempts to actively engage the public using methods derived from EBM. The first consisted of a set of six questions that patients could ask their doctors about treatment options. These questions were intended to help patients make requests for evidence-based treatments. The authors of that study planned to publish the questions as a booklet and distribute them to households in Switzerland. No follow-up data for this intervention was found [20]. Two reports represent more substantial attempts to provide consumers with the tools to engage with EBM and therefore to obtain some of the benefits of EBM described above. Both reports, from the same research team, describe a detailed curriculum, similar in style to those delivered to health professionals [25, 26]. In one report, the team delivered a 5-day curriculum, called “EBM@school”, to a group of school children aged 16–18 years. In the other, the adapted curriculum was delivered to patient and consumer representatives. Both papers focus on the feasibility of delivering EBM training to non-professional groups and the acquisition of skills and knowledge. More recently, a group in California, USA, report the successful provision of critical skills training workshops to mixed audiences including consumers [27].

These studies reported that teaching EBM skills to these audiences was feasible and enhanced participants’ critical health literacy. Although these reports describe active engagement with the public, it is important to note that it is as consumers, rather than producers of research.

The Cochrane Collaboration has established the Cochrane Consumer network. Members of the network are asked to appraise Cochrane systematic reviews before publishing. They do this as part of a team which may also include a service provider or researcher in the same area of healthcare as the review, a statistician and members of the editorial board of the Cochrane review group. Team members are given a checklist and prompt sheet and feedback to the review group. This is one of the few examples of active public participation in an EBM-based research process [28].

Given the lack of published reports about EBM and PPI, it is perhaps unsurprising that authors such as Glasby and Beresford have been sceptical about the potential for EBM to empower patients and members of the public. Some may argue that patient empowerment (however defined) is more easily achieved in non-medical environments. The potential dangers of attempting PPI in a medicalised environment include resistance from professionals and the co-option of patients into an agenda which is set by the medical profession.

Others have criticised such initiatives for falling foul of what Ives et al. term the “professionalization paradox” [29]. They suggest that the process of providing EBM-type training undermines precisely that which PPI values most, the ability to bring a lay perspective to bear on research. They argue that providing this type of training necessarily involves some degree of professional socialisation. As a result, they suggest that the ability of the lay person to bring the benefits of “layness” to research is undermined. This is not because members of the public lose their experience of illness, disability or accessing services as a result of taking part in training but because their lay perspective is “tamed” to bring it more in line with that of the professional researcher. This position runs contrary to current advice offered by the UK’s leading involvement organisation, INVOLVE [30]. Indeed, some funding bodies not only require researchers to detail their public involvement plans but also how they intend to support and train those who are involved [31]. The NIHR Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula (PenCLAHRC) regards training for PPI members as a vital part of the involvement process and central to the facilitation of meaningful, as opposed to tokenistic, involvement.

One reason the proponents of EBM for the public talk theoretically rather than from experience may be the practical difficulties involved in delivering EBM to the public. Providing EBM training to health professionals in healthcare settings has been problematic [32], and successful delivery to the public raises different but equally challenging difficulties. Bero and Jadad acknowledge only one main difference between policy makers and consumers when using systematic reviews, that of perspective, seeing policy makers as taking a general population perspective and consumers as concerned with their own perspective [19]. They fail to acknowledge that consumers and policy makers have very real differences when it comes to accessing systematic reviews, understanding and evaluating them and applying the results to their own healthcare decision making. Peninsula CLAHRC with its strong commitment to, and investment in, both EBM and PPI provides a unique opportunity to explore some of these issues in more depth. The aim of this paper is to explore the potential for EBM and PPI to complement one another and the impact of providing EBM training to service users.