General discussion 227 7 or tools. For instance, developing screening recommendations may introduce additional issues when accounting for variability in values and preferences, as well as costs. For example, individuals should have the ability to make an informed decision regarding whether or not to undergo screening tests, based on their preferences, such as a desire to be fully informed or a wait-and-see approach when experiencing symptoms. This could impact the considerations that need to be made when moving from evidence to a recommendation, as well as the formulation of recommendations, which may require testing specific knowledge or tools. The author of this thesis is an experienced independent self-employed guideline methodologist, who has worked for various Dutch organisations, in guideline development, training, coaching, improving and facilitating guideline development methods for over 25 years. This experience strengthens the thesis by aiding in problem structuring, identifying relevant research questions as well as potential interventions, collecting data, and implementing results. However, over-engagement could also lead to conflicts of interest, blind spots, and selection bias in data collection. To reduce these risks, the studies conducted in this thesis involved a critical supervisory team and several authors with diverse perspectives. Reflections Test-management pathway concept This thesis highlights the relevance of the test-management pathway concept (figure 1). When reflecting on this concept over the years, a few things emerge. First, the language has become more inclusive. This is consistent with the trend to use ‘guidelines’ as an umbrella term, rather than clinical practice guidelines or medical guidelines, to include, for example, public health and non-clinical professionals. An example of this more inclusive language is the term test-management pathway itself, which has previously been called test-treatment pathway, test-treatment strategy, management pathway, care pathway or clinical pathway [20]. The term testmanagement pathway is more neutral and includes populations other than patients, such as public or consumers, as well as other actions following test results rather than treatment, such as further testing or watchful waiting. The same principle applies to the target population and people-important outcomes, which were previously referred to as patients, and patient important outcomes or patient relevant outcomes, respectively. To be as inclusive as possible, one could also argue for ‘outcomes important to people (who receive the test offered), relatives (for example, in genetic testing for inherited diseases), society (to include public impact, for example, relevant
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