COHESION’s Opinion Survey: Here’s What Our Participants Have to Say!

Now that we’ve covered why public engagement is important for public health research, let’s show you how the COHESION study has started engaging participants! The public can engage with a study in many ways: from being informed and consulted, to collaborating, or even partnering with the team. As a first effort, we developed an opinion survey in December 2020,  to consult participants and get feedback on their experiences with the study. The survey included multiple-choice and open-ended questions so that respondents could expand on their answers. Participants suggested ways to improve their experiences, topics for future questionnaires and shared their thoughts on the COHESION study. 

To our surprise, over 350 participants responded to the survey! To let you in on some of our results, here are some interesting findings from the opinion survey.

Why are you participating in the COHESION study? 

73% of respondents expressed that they are participating for the importance of the issue, followed by participating out of curiosity or altruism. Others cited answers such as enjoying surveys, wanting to win a raffle prize, to help study the impacts of the pandemic, or out of interest in research. 

💡 Why is this important?

Knowing why people are participating can give us insight on how to frame our study and how to motivate others to join! 

Did you experience any troubles and doubts completing the questionnaires?

The majority of respondents did not encounter any problems or doubts while completing past questionnaires. Out of the 25% who did experience problems or doubts, only 5% contacted our program coordinator. The main reasons why they did not contact the program coordinator were either that the issue fixed itself, that they lacked the time or that they did not have the necessary information. 

💡 Why is this important?

Knowing how participants are dealing with the platform allows us to make any adjustments that can make their experience easier. It is also important to know that if they do experience issues, the program coordinator should be at hand to help. Considering that only 5% of those who experienced issues contacted the coordinator, steps can be taken to make sure contact  information is clear and readily available.

What about the user-friendliness and structure of the study? 

Respondents were asked to rate a series of statements on the user-friendliness of the COHESION platform on a scale from  “strongly disagree” to “strongly agree”. Statements included: “The platform used for the surveys is user-friendly”, “The surveys are presented in an organized way”, “The questions in the surveys are easy to answer”, “the questions in the surveys are too long”, etc.

Participants found that the length of surveys could be reduced, and that some questions could be formatted differently (ex: include example answers, add a “No answer” option, or allow for short answers). They also commented on the VERITAS questionnaire, the map-based section where participants identify places visited along with social contacts. Comments about VERITAS highlight the difficulty of remembering past places visited, difficulty modifying or deleting places visited, and confusion over what defines a place visited.

💡 Why is this important?

Despite general agreement towards the platform and questionnaires being easy to use, efforts to simplify and shorten our questionnaires and the VERITAS section are underway. Understanding how people experience VERITAS allows us to consider possible biases, like memory bias, when analyzing responses. 

Which themes were most liked?  

We also asked respondents to rate their appreciation for the themes covered by the study, from “strongly dislike” to “strongly like.” Participants especially liked the themes “Daily activities”, “Concerns about the COVID-19 pandemic”, “Health”, “Sleep” and “Vaccines.”  While ratings for the themes “Substance use”, “Child Difficulties”, “Back to School”, “Places visited” and “Food Security” were more neutral or negative.

In this section, respondents also suggested themes for future questions. Some suggestions included: 

💡 Why is this important?

Knowing which themes our participants like or dislike helps us ensure the questions we’re asking are relevant for our participants and allows us to plan for future questionnaires. 

It also allows us to adapt our questionnaires if certain themes are too specific. For instance, the most disliked themes were also those that refer to specific situations that don’t apply to everyone, such as being a parent, going to school, substance use, etc. Finally, the suggestions for future themes help us know what people are curious about, along with some of the worries and situations the pandemic may have created. 

Do respondents download the ETHICA application?

Participants also have the option to download a smartphone application, ETHICA, to complement data from questionnaires. The application supplements the study with regularly collected GPS, sleep, mood, and social contact data. At the moment of this survey, 41% of respondents had downloaded the application. The main reasons for not downloading ETHICA include not owning a smartphone, not feeling as though it is necessary, not having space, having privacy concerns, and troubleshooting issues.

💡 Why is this important?

Knowing the reasons why participants did or did not download ETHICA can give us insight on how to present this phone app as a complement to the study and better explain how this data will be used. 

Are respondents interested in giving us more feedback? 

Finally, 38% of respondents to the opinion survey expressed a desire to continue helping the team improve the study. The majority would like to keep providing feedback through surveys, but many are also interested in participating in small group meetings. 

💡 Why is this important?

Given the amount of interest for more participation, we partnered with the Centre of Excellence on Partnership with Patients and the Public (CEPPP) to help develop a participation strategy. Along with more surveys, we are planning on creating working groups with COHESION participants who wish to help the team. 

What can the Cohesion Study do to improve your experience?

Last but not least, we asked our participants what the team could do to improve their experience. Our participants stated that they would like the team to communicate with them more regularly, would like us to share results and our progress more frequently, and would like to know how their participation benefits the study. We agree!

💡Why is this important?

Starting this Fall, COHESION is launching regular newsletters that will feature preliminary results, news from researchers, and anything COHESION-related! In the meantime, don’t forget to follow COHESION on social media!

So what's next? Over the past months, we’ve taken our participants’ feedback to heart and considerable changes have been made to make our questionnaires simpler and more accessible. Your feedback from the opinion survey has allowed us to improve the study, fine-tune some of the kinks and make it more relevant and enjoyable for current and future participants. But these are just some of the changes we’ve made... we don't want to spoil the surprise! Stay tuned for more news coming this fall! 

Written by Alexie Kim and the COHESION Study Editorial Board, designed by Impakt Scientifik Agency.

5 reasons to encourage public engagement in health research

While the crisis sparked worldwide interest in public health among the public, they were not always included in the decision-making process of health mesures. Today, many health researchers, in hospitals, research centres and community organizations, want to shift from the passive role of citizens (being recruited to participate in a study), to the active engagement of the public in the research process (being involved in its planning, implementation and evaluation). 

What is public engagement in research?

Have you ever interacted with a healthcare professional who did not fully understand the realities of your day-to-day life? Have you ever participated in a study where the questions were not relevant to you? Have you ever felt misrepresented by a project or intervention?

Public engagement occurs when citizens "meaningfully and actively collaborate in the governance, prioritization, and conduct of research, and in the synthesis, distribution, sharing, and translation of the resulting knowledge."

Centre for Excellence on Partnership with Patients and the Public (CEPPP)

In other words, public engagement is the inclusion of citizens in the research process and considers their knowledge as valuable throughout the project. Their participation may be needed at different stages of the project. In fact, they may act as consultants, collaborators or even partners.

Here are 5 reasons why you should include public engagement in health research

1) Public engagement builds a sense of community

Engaging with the public is an opportunity to strengthen relationships with the groups and communities your research wishes to serve. Public engagement can also improve participants' trust in researchers and increase their sense of belonging to your study.  

2) Public engagement can highlight blind spots

Public engagement celebrates and values the unique knowledge that each person brings, in the same way we value academic knowledge, to improve the study. The public's knowledge can be very health-specific, such as having health problems, having received treatment, or living with risk factors. It can also be more general, such as living in a certain region, being a parent, or being a racialized person. By engaging with your public, you recognize that each individual is an expert on his or her own health, illness, and social situation. It can even make you aware of knowledge and experiences that you may not share with your audience. Most importantly, this allows you to identify blind spots in your project - and adjust accordingly.

3) Public engagement increases the relevance and usefulness of your research

Making science and research more accessible to the public can remove some of the barriers between researchers and the public. Actively involving citizens throughout your research ensures that it is designed with the relevant groups in mind, and that its objectives are translated into appropriate actions. Ultimately, it can lead to better health care, and improved health and well-being. The ultimate goal is to develop projects and interventions that evolve with, for and by the population.  

4) Public engagement fosters capacity building

Public engagement processes allow those involved to develop new skills and abilities. Teams that include citizens in their projects provide them with the necessary tools and support to empower them. Plus, citizens who collaborate with research teams strengthen their self-confidence as well as skills such as leadership and public speaking.

5) Public engagement reinforces several public health values

Public health is based on several core values such as transparency, openness, autonomy and empowerment, collaboration and reciprocity. These values, central to health promotion, encourage processes that support health improvement and quality research. For example, by being transparent and collaborating - values that increase our trust in institutions - public engagement increases the relevance of research to improve health and well-being (linked to reason #3!).

Overall, including the public and their real-world knowledge is an opportunity to improve research and inform its processes. The COHESION study is currently developing public engagement activities. In December 2020, the team sent out its first survey to better understand participants' experiences. Stay tuned for more blogs on the results of this survey and upcoming public engagement activities!

Written by Alexie Kim and the COHESION Study Editorial Board