Many recommendations in guidelines directly affect care for patients and the public. Therefore, efforts should be made to produce knowledge tools for patients (that is, patient-directed knowledge tools) to facilitate patient participation in decision making about care and treatment. There are many ways in which patient-directed knowledge tools can present care and treatment options to patients and the public, including:
- a plain language summary as described in Glenton et al. (2010)
- an interactive summary of findings tables as described in the DECIDE interactive summary of findings table
- a patient version of a guideline, as highlighted in Schafer et al. (2015)
- promotion of single recommendations, as in the Association of the Scientific Medical Societies in Germany (2020)
- interactive patient decision aids, as done by the Ottawa Hospital Research Institute (2020) or 1-page tabular decision aids such as The Dartmouth Institute’s Option Grids
- decision boxes, as highlighted in Giguere et al. (2012)
- facts boxes, as shown in Schwartz et al. (2007).
No single approach has proven to work substantially better than another, although interactive and tabular formats have generally been well received, according to DECIDE’s work with patients and public. Whichever format is used, it is important to involve people from the target audience for the patient-directed knowledge tool when selecting and developing the tool (DECIDE patients and public, Stacey et al. 2014, Stacey et al. 2019).
Table 1 presents Dreesens et al.’s (2019) framework with the various tools and their purposes. The first part of the framework describes the tools’ purposes and the second focuses on the tools’ core elements.
Table 1 A conceptual framework for patient-directed knowledge tools to support patient-centred care (based on Dreesens et al. 2019)
|Type of tool||Purpose: inform or educate||Purpose: provide recommendations||Purpose: support decision making||Purpose: engage in shared decision making|
|Patient information and educational material||+||–||–||–|
|Independent or pre- and post-encounter patient decision aid||+||–||+||–|
|Patient version of clinical practice guideline||+||+||+||–|
|Encounter patient decision aid||+||–||+||+|
Patient decision aids
A Cochrane review on decision aids described them as an intervention designed to support patients’ decision making by providing information about treatment or screening options and their associated outcomes compared with usual care and alternative interventions (Stacey et al. 2014). Decision aids inform patients clearly about their options and prepare them to participate in decisions about their care and treatment. Information on shared decision-making tools can be found in the upcoming chapter on guidelines and shared decision making.
Decision aids, such as Option Grids and Facts boxes, are based on the best evidence and input from patients and healthcare professionals. They are easy to read and use. They can ensure decisions are well informed and made carefully considering patients’ views (The Dartmouth Institute, Giguere et al. 2012).
Patient information, such as leaflets, can empower patients to ask questions about decisions on diagnostic and treatment interventions. A patient leaflet may include one or a few recommendations from guidelines on a specific topic to help with decision making. Initiatives such as Choosing Wisely, produce materials to promote conversations with healthcare professionals and patients and about what is appropriate and necessary treatment.
Patient versions of guidelines
Patient versions of guidelines are tools that ‘translate’ guideline recommendations and their rationales so patients and the public can easily understand them. Patient versions of guidelines can support individual decision making and help to foster a trustworthy patient clinician relationship in that they provide understanding about how, based on the evidence, clinicians should treat a condition. In turn, people may feel reassured and confident in their care. In situations where they are not offered care options recommended in a guideline, patients may intervene thus supporting guideline implementation (See the chapter on dissemination and implementation for further information [LG1] ). Box 1 describes the purposes of patient versions.
Box 1 Purpose of patient versions of guidelines
- Allow priorities to become clear to patients.
- Highlight to patients the benefits and harms of interventions to support decision making.
- Identify interventions for which there is good evidence that harms do outweigh the benefit, potentially reducing the use of or demand for unproven interventions.
- Point out other uncertainties and emphasise when a patient’s own values and preferences are especially important for making a treatment choice.
- Identify lifestyle interventions and ways in which the patient can take steps to manage their condition.
It is important that patient versions are derived from guidelines that have recommendations based on a high-quality systematic approach and a formal consensus process. Recommendations for or against interventions will involve the guideline development group’s value judgements, which may be the wrong choice for individual patients. Hence, the adequate application of a guideline does not only imply strict adherence to guideline recommendations but also reasonable non-adherence because of a patient’s individual preferences or circumstances. It is crucial that guidelines convey this idea to both healthcare professionals and patients, and provide information to facilitate decision making.
Although the word ‘translate‘ suggests using a different language, producing a helpful patient version is about more than tailoring the language to patients and the public. It involves:
- the selection of recommendations and outcomes to present
- how to present the strength of the recommendations and uncertainty in the evidence
- how to present the options available to a patient, and
- decisions about general formatting because patient versions may vary widely in format, length and content.
[LG1]Please change to ‘See the chapter on dissemination and implementation for further information’ when that chapter is published, and add a link to it.