The contribution of user participation to knowledge production
Much research (1, 3) – (8) points to advantages of user participation, not least that it provides access to knowledge that the research communities do not possess, such as the first-hand experience of patients. This type of subject orientation may increase the relevance of research. User participation is also linked to empowerment; the fact that the voice of the users is recognised in knowledge production may have an invigorating effect on them.
Some challenges remain, however. Researchers, clinicians and managers may be uncomfortable with relinquishing or sharing power and influence in collaborative projects, which may cause the users to be sidelined and kept from participating in major decisions regarding the project (3). Other challenges may include expectations, time and resources. Users may have unrealistic expectations with regard to the outcomes of the research effort. The projects are resource-intensive in terms of time and money. Such issues must be discussed openly at the initial project stage. The objective of this article, however, is to focus on the challenges and opportunities of user participation for the scientific process and knowledge production. We would like to mention research quality, representativeness and possible bias.
One essential impact is how patient participation implies an opportunity to learn «from the inside». However, this insider knowledge must be regarded and used as something more than mere isolated stories. The patients’ knowledge may have a potential for adjustment of the objectives, research questions and implementation of the research effort. Epistemic cultures need to be challenged.
One pitfall consists in presuming that the patient who tells his or her story also understands it – that a description presupposes understanding. This may happen if the researchers fail to critically question the patient’s narrative or to see it in a larger social context, because they are apprehensive of being perceived as not recognising or believing in it. However, the researcher cannot disregard the social, cultural or political issues that envelop the user’s notions of reality – this would mean losing essential contextual information and the opportunity to see the patient’s knowledge in a wider perspective (4).
It is frequently claimed that user participation can enhance data quality. Qualitative interview projects underscore how informants reveal more when users interview users, because they perceive the power relationship in the interview setting as more equal (5). Research results may also be different from when the research is undertaken by traditional researchers; for example, it may be perceived as more relevant for practitioners and users.
One challenge, however, consists in the question of representativeness – of whom is the user representative? Which patients express interest in participating as co-researchers? This underscores a key point: recognition of the patients’ experiences must not cause personal insider knowledge to be granted a special position. Regarding the narrative of one patient as representative of a group of patients may help produce a new homogenisation, as well as undercommunication of complexity, different identities and relationships, thus risking a new form of «essentialism».
Users may have their own agenda and help produce generalisations on the basis of their own experiences. Subjective experiential knowledge may consist of widely varying experiences, and this may give rise to bias in the knowledge base. In other words, the strength of user participation – its recognition of individual user experiences – may also represent a challenge for the scientific process. One solution could be to rethink how the user should participate and reconsider the amount of personal experience he/she needs to have gained with regard to the research topic in question. For example, a user representative could participate in research in places other than the institution in which he/she has been a patient (4).
Another objection could be that the users possess no knowledge or skills in the scientific procedures of the research process. Several countries have therefore developed special courses for users who need more competence (6). However, this could also be linked to the question of representativeness – does this mean that the user’s perspective develops to become more convergent with that of clinicians and researchers? If so, is this user participation genuine?