As explained in the section on the stage of the guideline development process at which research evidence about patient views can be used, research about patient views may contribute to multiple stages of a guideline and to many factors when making a recommendation. In this section, we provide several examples of how this research may be summarised and presented so it can be incorporated into guideline recommendations.
A list of patient research priorities based on research
At the guideline development stage of generating questions to cover in a guideline, the guideline group may search the grey literature for research about what is important to key stakeholders. The James Lind Alliance website can be searched to find research about patients’ top research priorities for a topic. Figure 2 shows the James Lind Alliance website’s top 10 questions on diabetes and pregnancy (as well as information about how the research was conducted to inform the priorities). Presented this way, the guideline panel can easily incorporate this information when generating questions.
Figure 2: Information from the James Lind Alliance website about priority questions related to diabetes and pregnancy
A thematic summary of patient views from evidence syntheses of qualitative research about acceptability presented narratively and in a table with rating of certainty
A synthesis of systematic reviews of qualitative research was conducted and informed the development of the WHO guideline: recommendations on digital interventions for health system strengthening (2019a). It includes recommendations on using digital health interventions for reproductive, maternal, newborn, child and adolescent health, in particular, for the use of telemedicine. An overview of systematic reviews of qualitative research on patient views of telemedicine was conducted. The evidence was summarised in themes and presented narratively and in tables, along with the confidence in the evidence. Figure 3 shows the research evidence on acceptability that was used to make the recommendation for using client-to-provider telemedicine (Glenton et al. 2019). The evidence statement ‘Some clients believe that telemedicine has increased their independence and self-care, but some healthcare workers may be concerned about clients’ ability to manage their own conditions (low confidence)’ from the thematic text is reflected in the table item F7.
Figure 3: Narrative summary of the themes from the systematic reviews and summary in a table
A narrative summary of themes from a systematic review of qualitative research as evidence of benefits and harms
A systematic review of qualitative research was conducted for the Scottish Intercollegiate Guidelines Network (SIGN) guideline on managing long-term effects of COVID-19. Based on a search of bibliographic databases, grey literature and pre-print databases, 6 studies were included, and a thematic synthesis was done. Each of the themes was summarised and presented in the COVID-19 rapid evidence review. Managing the long-term effects of COVID-19: the views and experiences of patients, their families and carers (Healthcare Improvement Scotland 2020). One of the themes (Analytical theme 9) identified desirable features of healthcare services or service delivery, which in turn led to recommendations for health care professionals to perform person-centred assessments (figure 4).
Figure 4: Example of a narrative summary of themes from qualitative research on the views and experiences of patients, their families and carers (Healthcare Improvement Scotland 2020)
A table summarising a synthesis of quantitative studies about patient acceptability and the certainty of that evidence along with other benefits and harms
A systematic review of randomised and non-randomised studies was conducted to inform recommendations for treatments, including thermal ablation or cryotherapy, to treat precancerous lesions in the WHO guideline on for the use of thermal ablation for cervical pre-cancer lesions (2019b). Acceptability was measured in the trials. The effects from the individual studies were pooled and presented along with the benefits and harms of the treatments in a Summary of Findings Table (Annex D Evidence to decision frameworks, page 43), shown in figure 5. The effect was that it was likely that there was little difference in acceptability between the 2 treatments.
Figure 5: Summary of findings table including patient acceptability between 2 treatments (WHO 2019b)
A summary of quantitative and qualitative research about patient views related to equity using the Evidence to Decision framework to present the evidence
A systematic review of research was conducted for a recommendation comparing different models of care for people with haemophilia (Pai et al. I2016). The review included any quantitative or qualitative research, such as focus groups, interviews and surveys, about barriers to accessing an integrated model of care. The review provided evidence about the impact of the model on health inequities and was summarised by analysis of thematic areas. The evidence was presented to the guideline group in a section on Equity in the Evidence to Decision Framework and then used by the group to make the recommendation (see figure 6).
Figure 6: Equity section of an Evidence to Decision Framework with a summary of the studies by theme (Pai et al. 2016, see hae13008-sup-0003-AppendixS3-S4.docx)
A summary of a systematic review of research about values placed on outcomes
As described in box 1, a systematic review of patient values and preferences was conducted for the American Society of Hematology guidelines for management of venous thromboembolism (VTE) disease (Etxeandia-Ikobaltzeta et al. 2020) Multiple databases were searched for both quantitative and qualitative studies. The authors summarised the research from non-utility studies on which outcomes patients with cancer valued more (along with the certainty of that evidence). This information was used when deciding how much weight to put on the benefits and harms of the different treatments (see table 7).
Figure 7: Summary of non-utility studies about the value placed on different outcomes in the treatment of venous thromboembolism (in table 4 of Etxeandia-Ikobaltzeta et al. 2020)