Session Type: ACR Poster Session B
Session Time: 9:00AM-11:00AM
Background/Purpose: The emergent practice of patients engaging in the conduct and decision-making aspects of health research has been accentuated in this decade. Its practice deems to improve the relevance, appropriateness, and knowledge translation of research by incorporating the patient perspective. However, systematic reviews (SRs) have highlighted a lack of common language across studies reporting this practice,[1, 2] making it challenging to examine the evidence in this area. To address this shortcoming, this study aimed to develop a taxonomy of patient engagement in research.
Methods: We systematically searched 6 electronic databases for relevant documents published January 1980 – July 2015. We also searched 4 key journals, reference lists, and the grey literature. Eligible documents were in English, with information relevant to patient engagement in research. We targeted theories, frameworks and models as well as SRs and commentaries related to the practice, to base our taxonomy. Content analysis was performed using 3 predetermined categories: 1) Who are the patients?; 2) How do patients engage?; and 3) When do patients engage?, that were formed based on prior readings. For example, one article emphasized that these 3 categories cover the context and process of patient engagement in research. The first author reviewed, extracted, and organized the data under each category. The data was analyzed for unique descriptors, then combined into themes. The descriptors were then defined and their relationships explored.
Results: A total of 29 documents (21 frameworks/models, 4 SRs, 1 commentary, and 3 empirical studies) contributed descriptors to the taxonomy. Each document provided descriptors in some themes, but none provided descriptors in all themes. Some documents contributed to defining and explaining the interconnections of the descriptors. These documents included models of information flow and communication between patients/public and researchers, community/patient/public engagement continuum, and the division of control and power over the research process. The results, summarized in Table 1, contain the categories ‘Who?’ described by type of affiliation; ‘How?’ described by the initiation, mechanism, and degree of engagement; and ‘When?’ described by the stage of research cycle divided across three research phases.
Conclusion: This taxonomy presents descriptors for diverse forms of patient engagement in research. Researchers could use this taxonomy to select options of patient engagement in research to plan their studies, then use its descriptors to communicate the context-specific contributions of patients. Future research should validate this taxonomy. 1. Shippee et al. Health Expect 18:1151-66,2015. 2. Domecq et al. BMC Health Serv Res 14:1-9,2014. 3. Esmail et al. J Comp Eff Res 4:133-145, 2015.
|Table 1. Descriptors in the taxonomy of patient engagement in research|
(Who are the patients who engage in research?)
(How do patients engage in research?)
(When during the research process do patients engage?)
| Type of Affiliationa
| Initiation of Engagementb
3. Joint patient and other-initiated
Mechanism of Engagement
1. Complete Interview/Survey (such as focus group and Delphi)
2. Attend Meeting
(such as a town hall meeting)
3. Perform Research-Team Activity (includes deliberation and organizational participation)
Degree of Engagementc
A passive recipient of information, within a research team.
Provides solicited information to inform decision-making in research, but does not have the authority to decide whether his/her expressed perspective contribute to the research process and outcome.
Engage in active communication with the research team, and has continuously shared power over decision-making and knowledge-use in the research process.
4. Lead: Co-lead, Delegated-lead, and Full-lead
Has the authority to make the determinative decisions in research-related matters.
| Stage of Research Cycle
1. Preparation Phase
1.1 Identifying and Prioritising
2. Execution Phase
2.1 Study Designing and Managing
3. Translation Phase
3.3 Evaluating Impact
|a Authors should had further context by providing individual patient or group characteristics, such as diagnosis, disease duration, sex, age, education level, the nature of the group (e.g. patient advisory board), and that number of patients in the group. b When the patient is the funder, use the patient descriptor. c Degree of engagement by patient increase from informed-patient through lead.|
To cite this abstract in AMA style:Hamilton C, Tran BC, Yoo JY, Leese J, Li L. Development of a Taxonomy of Patient Engagement in Health Research [abstract]. Arthritis Rheumatol. 2016; 68 (suppl 10). https://acrabstracts.org/abstract/development-of-a-taxonomy-of-patient-engagement-in-health-research/. Accessed September 19, 2021.
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