Question 2 (Brett P. & Chelsea Y.)

Figure 3 depicts the different methods and phases of engagement and the number of studies that employed each one.

Describe any trends/patterns you see from this graph.


The least frequent method of engagement was Deliberation/Organizational participation. Discuss why this may be the case and why other methods of engagement were more frequently used.

Figure 3 shows peak patient engagement during the preparation and early execution phases of projects, with surveys being the most common form of involvement and deliberation/organizational participation being the least common. Patient involvement tends to drop during data management portions of studies and increases for the final implementation of the study.

Deliberation/Organizational participation is likely the least used method of engagement due to the complex logistics and lengthiness of mass group organization and discussion. Furthermore, for some studies, a gross deliberation may often be deemed unnecessary as a result of little opportunity for variation in opinion about the research topic.

On the other hand, surveys are the most common form of engagement since they are easily distributed and can be compared quantitatively and unbiased. Focus groups are also more common, as they are easier to organize than massive deliberations since all contacts can likely come from the same “pool”, and usually require only few perspectives on the research topic (eg. If only a small population of homogeneously affected individuals are influenced by the outcomes of the study).

Brett, I agree with your synthesis of the data from figure 3 (Domecq et al., 2014) concerning peaks of engagement throughout the research project. It is also important to note that surveys and interviews may be similarly common in its implementation for engagement.

It is interesting to note that the areas in which involvement is less prominent are the areas in which are considered the most taxing and gruelling sections of the research process (e.g. data collection and data analysis). It is possible that tokenism and researchers attitudes, in which we considered last session, are the main contributors to this trend. It is possible that researchers do not believe that patients will be of value in these sections because they may not have a background in information synthesis. Surveys and interviews are used most in these areas for input due to the small costs of implementing and the low levels of engagement. These methods are more prominent because if researchers believe participation from patients will not be beneficial they will not only reduce the amount of engagement but they will limit their access to actively influence these difficult sections (evidence by the trend in least amount of participation regardless of method).

However it is not simply and similarly areas in which are seen as being more difficult in which we see a trend towards using surveys and interviews over focus groups and least frequently, deliberation/organizational participation. It appears as though the most commonly used method for engagement are those in which involve the least amount of active participation (surveys and interviews, focus groups and then deliberation/organizational participation). This is synonymous with last weeks readings which talk about tokenism and researchers attitudes about the benefits of including patients in the research. If researchers believe that including patients will not be useful they will limit this participation throughout the entirety of the project.