In total, 1206 members of the public responded to the survey. During initial review for relevancy, 50 responses were removed and the remaining 1156 responses were analysed.
Of the participants, 51% were female with a mean/median age range of 35-44 (Table 1). All demographic information was self-reported. The presence of a health condition was reported by 51% of the participants (n=591) and 36% indicated that they lived with someone with a health condition (n= 411). Details of the health condition were not collected.
Of the total respondents, 26 individuals (2%) indicated that they have taken part in health research as a community member. One response was removed as they subsequently commented in an open text response that they had not been involved in health research.
Females represented 54% (n=14) of the community members who indicated prior involvement in research. Community members were predominantly highly educated with 69% (n =18) holding an undergraduate or postgraduate qualification. This is greater than what was indicated in the broader cohort where 37% of individuals held an undergraduate or postgraduate qualification. The majority of community members (73%) indicated they were of Australian ethnicity, which was similar to the general cohort (78%). Marginally more community members were in paid employment (54%, n= 14), working >30 hours a week (50%, n= 7). Fifty-three percent (n=14) of community members volunteered in some capacity. Notably, this was greater representation than was seen in the general cohort where 24% of people regularly volunteered. Household income for community members was predominantly above $100,000 with 50% earning over this threshold. In the general cohort, 31% of respondents had a household income over $100,000. A vast majority of community members are living with a health condition (88%, n= 23) this is much higher than the general cohort where 51% reported living with a health condition (n= 591) (Table 1).
Table 1: Relevant Respondent Demographics
|
|
Full cohort (n= 1156)
|
Community members involved in research (n=26)
|
Variables
|
Attribute
|
Freq
|
Percent
|
Freq
|
Percent
|
Gender
|
Female
|
587
|
50.8
|
14
|
53.9
|
Male
|
565
|
48.9
|
12
|
46.1
|
Other
|
4
|
0.4
|
0
|
0
|
Age
|
16-17
|
10
|
0.9
|
0
|
0
|
18-24
|
127
|
11
|
3
|
11.5
|
25-34
|
194
|
16.8
|
4
|
15.4
|
35-44
|
229
|
19.8
|
4
|
15.4
|
45-54
|
215
|
18.6
|
2
|
7.7
|
55-64
|
182
|
15.7
|
5
|
19.2
|
65-74
|
134
|
11.6
|
3
|
11.5
|
>75
|
65
|
5.6
|
5
|
19.2
|
Education
|
<Yr 12
|
173
|
15
|
0
|
0
|
High School
|
183
|
15.8
|
2
|
7.7
|
TAFE/ Certificate
|
362
|
31.3
|
5
|
19.3
|
Undergraduate
|
287
|
24.8
|
7
|
26.9
|
Postgraduate
|
144
|
12.5
|
11
|
42.3
|
Chose not to answer
|
7
|
0.6
|
1
|
3.9
|
Ethnicity*~
|
Australian
|
904
|
78.2
|
19
|
73.1
|
British
|
81
|
7
|
4
|
16.4
|
Chinese
|
52
|
4.5
|
0
|
0
|
Italian
|
28
|
2.4
|
0
|
0
|
Indian
|
14
|
1.2
|
0
|
0
|
Income
|
<$20K
|
64
|
5.5
|
1
|
3.9
|
$20-34K
|
148
|
12.8
|
4
|
15.4
|
$35-49K
|
147
|
12.7
|
1
|
3.9
|
$50-74K
|
204
|
17.7
|
1
|
3.9
|
$75-99K
|
160
|
13.8
|
3
|
11.5
|
$100-149K
|
227
|
19.6
|
10
|
38.5
|
>$150K
|
127
|
11
|
3
|
11.5
|
Nil income
|
10
|
0.9
|
0
|
0
|
Chose not to answer
|
69
|
6
|
3
|
11.5
|
Living with a health condition
|
Yes
|
591
|
51.1
|
23
|
88.5
|
No
|
565
|
48.9
|
3
|
11.5
|
Living with someone with a health condition
|
Yes
|
411
|
35.6
|
12
|
46.2
|
No
|
745
|
64.5
|
14
|
53.8
|
Respondents were able to select multiple choices. Among the 1156 respondents, 17% (n = 199) reported previous experience with health research, with 77% (n = 154/199) people engaged as participants and 25% (n = 50/199) as parents or guardians of a participant. 71% (n = 110/154) of research participants also indicated that they have a health condition. A small percentage (3%, n = 35/1156) of individuals who did not report a health condition or living with someone with a health condition had taken part in health research as a participant (n = 27/35) or parent or guardian of a participant (n = 8/35). Of this group, two individuals had taken part as a participant and a parent or guardian (Figure 1).
Qualitative Analysis
Multiple choice responses relating to community perceptions of being involved in health research (Figure 2) are supported by superordinate themes present in the responses to open text questions. Key themes from both and representative of all respondents are presented here.
Involvement vs Participation
Answers relating to personal health risk and data privacy concerns were common. Even though questions used the term community involvement, respondents were clearly considering the collection and storage of personal medical data and samples and the trialling of therapies and medications in open text responses. These are all examples of participation activities. This issue was also noted in the Likert scale answers, where we asked respondents why they would not want to be involved in research and 19.6% (n=227) indicated that they had concerns about sharing their private health information. This points to an enduring and fundamental misunderstanding of community involvement vs participation in research studies.
Respondent confidence
Another key theme related to individual respondent confidence. Many respondents indicated concern about the perceived value of their potential contributions to research. Comments related to respondents’ age, education level, and whether their contributions would be ‘scientific enough’ to be useful to researchers, with comments such as “I may not provide relevant expertise”, “[I don’t know] whether my input would be of value”, and “what would I be able to contribute personally?” among the responses. Across the cohort, 26.4% (n=305) respondents cited a ‘lack of confidence’ in their ability to contribute positively to research.
Respondent roles and recognition
15.1% of survey respondents said they had not been involved in research because they were not interested, perhaps indicating a lack of personal investment in health research. This is not altogether surprising as the presence of a health condition is likely to indicate a personal investment in health research, further supported by the previously described proportion of respondents with personal or family health concerns. Notable alongside the discussion of respondent confidence was the perceptions of the role/s community members can and should have in health research. Respondents indicated a variety of preferences when asked how they ‘would like to be involved’ in research, including research translation (41.6%, n=481), reviewing communication documents (42.7%, n=494), knowledge dissemination (40.4%, n=467), outcomes measures (38.7%, n=447), and participant recruitment (33.1%, n=383). The most positively associated roles are in research design (42.9%, n=496), contributing to research outputs (46.5%, n=538), and research updates (59%, n=683). This supports responses (29%, n=340) which further indicated that they would be more likely to become involved if they were ‘recognised as a researcher or included in academic outputs’.
Trust and governance
Some interesting findings include the prevalence of open text responses relating to trust - trust in the organisation and/or individuals conducting the research, the funding source, and the drivers for research. Respondents expressed a desire to understand who was doing the research and why, and particularly where the money was coming from. Responses suggested that public institutions and community-led organisations would be considered trusted partners as their own motivations were perceived as ‘right’ or ‘good’, but private institutions with obvious commercial interests were likely to be viewed with more suspicion.
Motivation
Many respondents discussed the direct benefit to themselves, their family members, or their communities as reasons to take part in research at any level. Others spoke about improving the health outcomes of younger people with their diagnoses or positive outcomes for others with the same/similar conditions as primary motivators for involvement. Many responses indicated both personal and community level benefits as motivators. Notably, comments indicating ‘for the greater good’ altruistic intent outweighed those motivated by personal benefit. This motivation was also evident in the Likert scale responses, where 62.9% (n=727) of respondents said they would choose to become involved in research to ‘contribute to the health of future generations’(Figure 2).
Barriers and enablers
Overall, results suggest that while people have generally positive attitudes towards involvement in research, concerns around time commitment, recognition of value in the form of remuneration, and research accessibility persist as barriers. Comments such as [I would need to consider] “the costs associated for myself”, “cost or remuneration for taking part”, and “I would expect to be paid for my time” demonstrate a desire among respondents to be recompensed for their time and contributions. Additionally, many identified an inclusion issue, reporting that they would be unable to get involved as they could not afford the time, or conflicting work or caring responsibilities. At the least, there is a clear expectation that community members should not bear any financial costs for research involvement: 62% (n=717) of respondents indicated they would be more likely to become involved if they were ‘paid for any transportation costs to and from meetings’; and 62.5% (n=723) said that being ‘paid for my [their] time/role’ would increase the likelihood of involvement. 45.2% (n=261) also indicated they would want ‘researchers to organise and fund any services I [they] need to take part’.
Many respondents expressed concern about the time and effort required for the research involvement. Open text comments such as “I don’t have enough time free”, “I have other commitments”, and [I would need to consider] “time and distance constraints”, and “time and cost to me” suggest that while respondents are broadly supportive of involvement, research is not their core business and must be accommodated in their day-to-day lives. When asked about the barriers to involvement, 27% (n=316) of respondents said they ‘do not have time to become involved’.
Accessibility was another key theme when considering barriers and enablers, but a clear definition of ‘accessible’ research was not evident. For example, 31% (n=359) of respondents said they would prefer ‘meetings are face-to-face’ while 47% (n=543) said they would prefer ‘meetings are conducted online’. No consensus on preferred meeting format was evident. Carefully designed involvement activities that are mindful of the burden to community members might also reduce barriers for the respondents who indicated that the ‘person I [they] care for’ (11%, n=128) or they themselves (11.9%, n=138) are ‘too unwell’ to become involved in research.
Communication
This key theme highlights the importance of clear and open communication with community members about the time and activities required for involvement as well as the project itself - the risks, benefits, outcomes, and governance structures. However, the theme of communication was not purely researcher-community member but also included intra-community communication, with some respondents expressing concern about how their involvement might be viewed by their partners, families, and broader communities, for example stating that they would need to consider “how my community would perceive me” before involving themselves in research.
Families were mentioned in open text responses in three main contexts: (a) impact on time and family duties; (b) direct benefit of the research for family members; and (c) the support of families and partners as a consideration in committing time and energy to research involvement.
“Community”
The understanding and interpretation of the term ‘community’ was another interesting finding. Comments indicated a range of attitudes toward ‘community’, from the uncertain: “I don’t even know what the [sic] community member is”; “I’ve no idea what being a community member involves”, to the dismissive: “not being part of a community, I wouldn’t feel right being involved”; “I am not part of any community at all”; I don’t have time to participate in the community”, and even expressing negative feelings about it: “I do not like the community I live in at all”; “I am not involved with my community and don’t want to be”; “I don’t want other members of my community knowing anything about me”.