Whose Knowledge

DACEHTA initiated the report about patient education. The center is situated as a unit within the National Board of Health, who is also the contracting authority and the publisher of the report. As is the case with all national HTAs in Denmark, the “ownership” is announced clearly in the colophon to the report (7). HTAs are also always produced in collaboration with a multidisciplinary project group. The members of the project group generate the data, make the systematic reviews of existing literature and write the chapters in the report. However, the names of the researchers involved are not present either on the front page or in the colophon, but are listed inside the report, without any indication of their contribution. DACEHTA directs the assessment and carries out the final editing after the reports have been submitted to an external reference group and an external peer-review group.

Four researchers were engaged in the exploration of “the patient” element (two anthropologists, a philosopher, and a public health researcher). A reference group was invited to comment on a draft of the report and to join one meeting. Two of seventeen of the reference group came from patient organizations. The other members came from the Danish Regions, Danish medical and nursing societies, representatives from the Danish regions and municipalities, and the Ministry of Health and Prevention among others. This way of organizing the HTA work does not differ from the way other Danish HTAs are organized (Reference Dalton, Hansen and Johansen6;21). However, it is interesting that the researchers and their individual contributions and responsibilities fade into the background. Contrary to research dissemination in general, they are kept opaque to the reader. Normally, such opaqueness conflicts with the principles of good scholarship. In this case, however, the idea seems to be that the mere list of names provides some of the scientific authority claimed by the report. Therefore, it is not readily detectable whose knowledge the report represents.

Health policy makers and administrative decision makers are described as the main target group for the report. Another target group is people who are somehow involved in patient education such as healthcare professionals, people with chronic diseases and researchers (7). Thus, the target group that is going to benefit from the knowledge represented in the HTA is rather broad including people with very different backgrounds and interests. Furthermore, as is often the case for Danish HTAs, the report is lengthy (almost 190 pages, 130 pages of appendixes, and a summary of 16 pages). This means that it will take considerable time and effort to read the report critically.

What Knowledge?

Another important question is what counts as knowledge? To answer this, we explored the HTA questions that the report seeks to answer about patient aspects and examined the ways in which the literature (the data) used in the assessment was sought and reviewed. The report asks three questions: “Who uses patient education programs?,” “What benefits do the participants experience in relation to patient education?,” and “Which needs of people with a chronic disease are significant for the future organization of patient education?” (7, pp. 7–8, 48, 81). While the first question requires the identification and mapping of the users, the questions addressing patients' “experiences” and “needs” call for studies using a qualitative research design. It is worth noting that the report only asks for “benefits,” the assumption apparently being that patient education cannot be of disadvantage to the patients. Also, whereas the report defines the concept of patient education (7, pp. 45–46), there is no clarification of the term patient. The HTA questions—like research questions in general—are decisive for knowledge production because they determine what to look for (and accordingly what to look past) and how. In addition, they carry with them assumptions and meanings that it is important to scrutinize critically. Also, an analysis of the meanings of “patients” and “needs” could provide a greater insight into the particular modes of knowing the patient; this is, however, beyond the scope of the present article.

The generation of data for patient aspects in this report was carried out through a “systematic” literature review using six databases and covering 121 studies. This decision of using secondary data instead of primary data is not discussed in the report. The search procedures, the chosen databases, the evaluations of the quality of the qualitative literature and of the evidence, and the characteristics of the excluded studies are all described in the appendix (7, p. 283ff). However, we found it particularly interesting that the report seems to be especially critical of the qualitative studies relating to the second HTA question about patient aspects (e.g., the experiences of the participants), both in a special section in the report (7, pp. 85–86) and in the appendices. The report gives no reason for the choice of the evaluation parameters or explains why the notions of “neutrality,” “representativity” (ibid.), “evidence” are mobilized in just this case. These terms originate from a positivist epistemological tradition and are not unambiguous when it comes to evaluating qualitative studies (Reference Rod22). For instance, the report states that, “One could have wished for research with a higher degree of neutrality. . .”; “there may easily occur biases with regard to the representativity of the participants. . .”, and “. . . the studies do not make us any wiser regarding the long-term effects of patient education” (7, p. 85, our translation from Danish). Furthermore, in using words such as “one” or “us,” it is not clear who the “sender” of the criticism is. We acknowledge that this is a common way of writing especially when analyzing and conveying quantitative data. However, this may be a way of signaling an objective and detached stance valued within the positivist tradition that has influenced health sciences.

The move from the HTA questions to the search criteria or the reason for the choice of particular search categories and words and their combination are not set out explicitly in the report. However, these search procedures and the exclusions do have implications for the literature that was uncovered and for what counts as knowledge. First, by limiting the assessment of patient education to two diseases (Type 2 diabetes and COPD), it becomes difficult to generate knowledge about patient education in more general terms. Second, the choice of data bases, search words, categories (e.g., “expert patients,” “chronic disease management,” and “qualitative methods”) leaves out “grey literature,” “berry-picking” (Reference Bates2, p. 21), books, book chapters and PhD dissertations that could be relevant (e.g., Reference Grøn11;Reference Hølge-Hazelton17). Some of the reasons for exclusion are given in the appendix. Studies that do not address the “effect” of patient education are excluded. Also literature in, for instance, German and Spanish is excluded.

Third, words, terms, and categories are not “neutral,” but are always loaded with meaning. For example, how can the researchers of the patient education report be sure that the meaning of a search term as “expert patient” or the word “need” in the third research question is the same in different articles? Therefore, it should be asked whether the search words selected actually capture the literature that could have answered the HTA questions.

How? Constituting and Producing Knowledge

Questions of whose knowledge and what knowledge are obviously integral to the question of how knowledge is constituted and produced. However, compared with scholarly research in general, this HTA report does not explicate the premises for its knowledge production. Therefore, the answers to the how-question to a certain extent are rendered obscure. As one example, the HTA does not include a specific section on theory or analytical perspectives. However, the structuring of the report into the four key elements mentioned above can be seen as constituting a tacit theoretical approach because it is crucial for how knowledge is organized and presented.

While in relation to patient aspects the HTA report does to some extent describe its methods and procedures of exclusion and inclusion and its key concepts explicitly, it also takes certain notions and concepts for granted. As we have shown, the idea of patient education as a “benefit” or a “need” is never really questioned. The term patient is also taken for granted. But, who and what is the patient (and in that connection “expert patient”)? We have no space here to deal with this in depth, but we want to call attention to such tacit features of knowledge production in HTAs. In addition, we want to point out that words, concepts, and categories always carry with them meanings that may have a constituting impact on the knowledge product, and must, therefore, be critically scrutinized and clarified. Another crucial aspect of the how, is the relational dimensions of knowledge production. The Danish anthropologist Kirsten Hastrup states that knowledge is relational not only in the sense that it “attaches itself to relations among people,” but also because it emerges in a “dialogical field” (Reference Hastrup14, p. 456). It is impossible to infer this dialogical field (the discussions and negotiations between the different actors, and the forms of power that formed part of the HTA work) from the actual knowledge product (the HTA report) (ibid.). That would certainly require a qualitative enquiry into the process of knowledge production. But the micro-dynamics of the dialogical field and the ways in which the engaging researchers do their work and negotiate the knowledge outcome constitutes an important dimension of the social process of knowledge production. For instance, the researchers involved in HTA come from different disciplines and research areas and are, therefore, differently positioned with regard to university degrees, titles and academic interests and the forms of power—“symbolic capital” (Reference Bourdieu3)—that come with a certain social and academic position.

Finally, it seems that the notion of technology in HTA deserves some attention. The report seems to operate with the view that “technology” (in this case patient education) “comes first” and thereafter is implemented to affect the patients. This view leaves out the possibility of producing knowledge about the dialogical relationship between technology and patients and the ways in which patients may also shape and co-produce the technology.