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engage: U - M Clinical Research Survey Report Team Envolve (Pratibha Bhaskaran, Liz Blankenship, Tammy Greene) SI 622 • Assignment 6 • March 13, 2008


engage: U – M Clinical Research Introduction Engage is a University of Michigan initiative that matches volunteers for research studies with study teams. It includes an online registry, where people interested in volunteering may enter personal, medical and contact information, in order to be matched with study teams; they may also choose to directly contact the teams for studies they are eligible for and interested in. Engage offers the ability to search for studies, using keywords and filtering criteria such as age or medical condition. It also provides general information about clinical research and its importance. Engage users may be broadly divided into two groups: volunteers interested in participating in clinical research studies, and study teams that actually conduct the research. For our project, we have chosen to focus on the former population. The usage statistics of Engage show that approximately 75% of Engage volunteers are female, and roughly 55% are U-M employees (see appendix C). In the process of creating a generalized transition diagram for the Engage website, conducting interviews with Engage staff and volunteers, as well as potential volunteers, creating personas and scenarios and performing a comparative analysis and heuristic evaluation of Engage, we came across a number of issues involving the usability of Engage. Some of these included a great degree of 'text-heaviness', and some difficulty in navigating through the website. Our goals for the survey were thus based on these findings, to see if they could be substantiated by quantitative data. Our overall aim was to gain an insight into the general ease of use of the Engage website. We wanted to know specifically, how easy do users find the long enrollment process, and whether they have difficulties in searching for studies. We felt it was useful to know what the users' goals were in participating as volunteers, i.e. what motivates most Engage users to enroll as volunteers and participate in studies. Another element that tied in with this was to see if there was any correlation of participation for different research studies, i.e. whether Engage volunteers also participated in research studies outside Engage. Since a major component of the Engage website is its online registry, a key factor we wanted to assess was people's comfort level in divulging personal and medical information online. Also vital to ascertain, was what information potential volunteers needed to know in order to feel reassured enough to sign up for a study and participate in it.

Team Envolve • Engage U - M Clinical Research

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engage: U – M Clinical Research Methodology Overview The survey prior to the pilot included 21 questions that fit under the following three sections: Demographics, General Use of Engage and Usability of Engage. After the survey was completed and piloted, more revisions were made based on feedback from our participants. The final survey included 23 questions that remained in the sections highlighted above, and was administered using SurveyMonkey, an online survey service.

Question Selection and Design Our questions were based on the major themes that we wished to explore. They fell into four broad categories - demographics, issues surrounding volunteering through Engage, tasks that users performed on Engage, and the overall ease of use of the website. Our questions on demographics included general ones about gender, age group and internet usage that were aimed at gaining an understanding of the various user groups that use the Engage website. We also included questions about affiliation with the University of Michigan, ways that users found out about Engage and their frequency of using the site. Since the focus of our project is on people who volunteer for research through Engage, we incorporated questions aimed at giving us an insight into the specific concerns of this user group. First, we attempted to learn about their goals or motivation for volunteering for research. This was accomplished through question 12 (see appendix A for list of questions), which allowed the user to check multiple options such as if they had a medical condition, were interested in advancing medical care, etc. Second, we wanted to learn what concerns they had, if any, during the process of volunteering through Engage. This had two threads - one, were Engage users hesitant to provide private and medical information online (question 16), and two, what information was important for them to know about a study before they volunteered for it (question 15). We also wanted to understand what tasks Engage users performed on the website, and we attempted to ascertain this by asking questions about the features they used. Specifically, we asked them what they used the Engage site for, allowing them to select multiple options from the choices which encompasses the main functions of Engage - general information about

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engage: U – M Clinical Research research, searching and browsing for studies (question 11); which of the search options they used most often when looking for studies (question 17). Finally, we aimed to gain a broad understanding of the ease of use of the Engage website by using a Likert scale across a series of statements regarding navigability and findability of information on the site (question 18). We also included open-ended questions, inviting users to comment on what they liked about the site, and areas they felt could be improved (questions 20, 21, 22). While drafting the questions, we made it a point to keep the questions as succinct as possible, so that they were not too long yet still communicated their meaning unambiguously. We did not offer any incentive - cash or kind - to users for taking our survey. We felt that our survey did not demand much of the user's time, and believed that most Engage users would be generous enough to volunteer their feedback.

Pilot Survey We piloted our survey with four students at the University of Michigan, Ann Arbor after putting the survey online on SurveyMonkey.com. We also received feedback on the questions from our client. Only one of the pilot testers was an Engage user. Based on the following feedback, changes were made to the survey. First, our client suggested adding an additional option capturing the altruistic nature of many of Engage's volunteers on the question that was intended to capture the user's goals for participation. So, the option, "I am interested in advancing medical care" was added to the question. With the question assessing the comfort level for putting personal or medical information online, the context was confusing for a pilot participant due to the location of the question. This question followed the questions pertaining specifically to Engage, so a change was made adding "In general" to better frame the context of the question. In the Likert scale questions that included topics regarding the usability of the Engage site, the wording of the questions were alternatively negative and positive. The results from our pilot test indicated that these questions should all be worded positively or negatively to avoid confusion and to provide clarity for the follow-up question, which requested explanations for any statements that were disagreed with. The questions were thus changed, so that all were worded positively.

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engage: U – M Clinical Research Lastly, in thinking about our next step of usability testing, we included a question asking for the survey participants' contact information if they were willing to participate in the future with our project.

Sampling and Recruitment The survey was conducted using SurveyMonkey, which afforded the ability to provide a wellstructured and aesthetically appealing survey. Initially, we planned to contact a large quantity of current Engage users by way of an e-mail relayed by Molly Dwyer-White directly to Engage users. Unfortunately, to abide by Engage's IRB contract and to avoid IRB issues, the message could not be disseminated directly to the email addresses of registered Engage users. To overcome this hurdle, we collaborated with the Engage site programmers to add a pop-up to the website that was generated by SurveyMonkey, as well static links on the side navigation panels of several relevant pages such as the homepage, the 'volunteer for research' page and the 'find studies' page (see appendix B for detail) directing users to our survey. Participants were also recruited via a standard email sent out by our client, Molly Dwyer-White, to several different email groups she felt represented the Engage volunteer population. The email contained a link to the survey (see appendix B for text of the e-mail). We wanted to sample only those people who had actually used the Engage website, and so we restricted survey recruitment to these two methods. However, this means that we do not know the actual response rate of the survey, as we do not have usage statistics for the Engage website, or the number of people who received an email initation. Nevertheless, we believe the survey has generated some valuable findings that will help us evaluate the usability of Engage. Of those who were invited by email and through the website, 32 took the survey and completed it. There were no dropouts.

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engage: U – M Clinical Research Findings Key Findings Our key findings are as follows: 1. Several people visit the website relatively frequently, but only a small fraction participate in studies. 2. Most users appear to find the website easy to use. 1. O nl y S mall Fra ct io n Vol unteer

Survey participants were asked a series questions related to their use of Engage to gain a better perspective of how and why Engage is used. The survey findings indicate that while the purpose of Engage is to connect users to clinical research opportunities and to provide an avenue for securing volunteers, a majority of the participants only use it to browse clinical studies but do not volunteer. Almost one third of survey participants answered that they visit Engage on average one to three times per year (28%), while 23% answered one to three times per month and 16% said they visit the site almost daily. But an overwhelming 72% of the survey participants have not participated in clinical research in the past year. And also of the survey participants, 72% have never volunteered to participate in a clinical research study through Engage. A comparison of these statistics reveals that though a majority of the survey participants may occasionally visit the site, they do not use Engage to directly volunteer for clinical research. (See appendix A) The reasons for this are unclear. A possible explanation is that some users might look at studies, and even enroll in the registry, but find they are not eligible. 2. Mo st Peop le S ati sfi ed wi t h E ngage Us a bilit y

In our series of questions assessing the usability of Engage (question 18), users responded surprisingly positively about the system, with nearly every question having 70% or greater of respondents replying in the Neutral to Agree range.

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engage: U – M Clinical Research 10-15% chose N/A for the questions as well, some explaining that they were first time users and had not yet tried the site's functionality. That leaves less than 15% of all respondents dissatisfied with the usability of Engage. This marks a departure from our findings during user interviews and heuristic evaluation, that it was difficult to find information on the site. We feel that the survey responses might possibly be skewed because we worded all questions positively, a change we made when refining the survey after the pilot test. We also question whether including "Strongly Agree" and "Strongly Disagree" options would have helped to differentiate mild satisfaction from those who feel strongly about Engage's usability. Although it appears most users are satisfied with the Engage site's usability, in our open response questions we did receive some specific feedback about problems. In an open-ended question, we asked what users would like improved about Engage. Six users responded about aspects of usability in the following ways: "more directions on where to go on the site" "easier access" "….could be clearer in their caveats about what is and isn't expected of participants…." "The search function." "Ease of navigation" "usability - and more useful content" In addition, the open response question asking why they disagreed or somewhat disagreed with one of the questions posed in the Likert scale format yielded this input: "Most studies have specific age ranges for eligibility. I haven't discovered a way to filter for that, so wind up having to look at every single study (within my category/ies to find which ones I would be considered for…) "– related to disagreeing with the statement: I am able to search on the Engage site easily. "Not lay friendly without some person supportingthe [sic] individual looking for a study" – related to disagreeing with the statements: I am able to navigate through the site easily, Enrolling in the Engage registry was easy, I am able to understand the language of the details of the study, I am able to find the information important to considering participation in a study, and I am able to search on the Engage site easily.

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engage: U – M Clinical Research These users identified some of the same issues that we have found in our previous usability analysis involving the ease of navigation, searching and registering for access on the Engage site. These findings indicate that while most participants were satisfied, there may still be improvements that can made to better the usability of the Engage site.

Other Findings Demographics The 32 people who completed our survey seemed to be fairly representative of the user base of Engage, with the gender ratio indicating mostly females and about half the respondents being employees of the University of Michigan. The gender ratio of responses was unsurprisingly skewed toward having many more women (84% of respondents were female, while 75% of the registered users are female). About 55% of registered Engage volunteers are U-M employees, and roughly 44% of survey respondents identified themselves as U-M staff. (See appendix C ) Of the 32 survey participants, we were surprised to have three under 18. We did not require IRB approval for our survey since it was for a class project, so this is not an issue. It shows that an informed consent form screening out these users would have been necessary for more formal research. It is surprising to note that though about half the respondents identified themselves as students, only two respondents listed (currently or formerly) being a U of M student. This suggests that Engage has a wide student outreach outside of U-M, possibly with other local universities or schools.

General Use of Engage A majority of the survey participants indicated that they use the Engage site to browse for clinical research studies (65%) (see appendix A). The participants also indicated that they are most interested in helping to advance medical care (69%) and in being compensated for participation in Engage studies (58%). Also, prior to involvement, the participants indicated that all presented options were important to know. The following options are ranked in order of importance: Procedures (psychological questioning, drawing blood, etc.) (78%), Health Risk

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engage: U – M Clinical Research (75%), Time Commitment (71%), Compensation (68%), and Potential outcomes - how the study might benefit science/people with the condition (68%). The usability part of the findings also show that participants agreed or somewhat agreed that the information important for considering participation in a study is easily found (63%). Despite occasional visitation to the Engage site and the ease of use of the site (discussed more below), the findings indicate that there is a barrier between the Engage site and volunteerism through Engage or any other resource for clinical research. Of the 28% who have volunteered for clinical research this year, only 44% did so through Engage. So, it seems as if another method is being used to secure their participation in studies, quite possibly by phone.

Summary Overall, the process of creating and administering the survey was enlightening, giving insight into both how users feel about the site and into the complexity of the surveying process even for such a small -scale survey. We faced challenges with recruitment but in the end we were able to better understand what volunteers' and potential volunteers' usage of the site is like. Although the survey itself did not definitively answer our questions about usability issues with Engage, it brought about new questions that we did not ask, such as whether a first time user of the site is impacted by the usability and aesthetics of the site in their decision to return to the site. We plan to address this question in our usability testing by including several users who have never before accessed the website, but who are in the target audience.

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Appendix A: Survey Questions and Summary of Responses 1. How old are you? Response

Response

Percent

Count

Under 18

9.4%

3

18 to 25

18.8%

6

26 to 35

25.0%

8

36 to 50

28.1%

9

51 to 65

18.8%

6

over 65

0.0%

0

answered question

32

skipped question

0

Response Percent

Response Count

Male

15.6%

5

Female

84.4%

27

answered question

32

skipped question

0

2. What is your sex?

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3. What is your primary occupation? Response

Response

Percent

Count

Student

53.1%

17

University Staff

46.9%

15

University Faculty

0.0%

0

Other (please specify)

9

answered question

32

skipped question

0

Response Percent

Response Count

No

56.3%

18

Yes (Please explain briefly)

43.8%

14

answered question

32

skipped question

0

Response Percent

Response Count

Undergraduate student

3.1%

1

Graduate student

3.1%

1

Faculty

0.0%

0

Staff

43.8%

14

No affiliation

50.0%

16

answered question

32

skipped question

0

4. Is your occupation in any way related to medicine or health?

5. What is your primary (current or former) affiliation with the University of Michigan, if any?

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6. What type of internet connection do you use when viewing the Engage website? Response

Response

Percent

Count

Broadband (Cable modem or DSL)

71.9%

23

LAN

9.4%

3

Dial-up

0.0%

0

Don't know

18.8%

6

Other (please specify)

1

answered question

32

skipped question

0

Response Percent

Response Count

Less than an hour

6.3%

2

1-5 hours

18.8%

6

6-10 hours

34.4%

11

11-25 hours

21.9%

7

More than 25 hours weekly

18.8%

6

answered question

32

skipped question

0

7. How much time do you spend on the internet every week?

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8. How did you hear about Engage? (check all that apply) Response

Response

Percent

Count

Flier, brochure or poster

46.9%

15

Newspaper

3.1%

1

Radio

3.1%

1

Television

0.0%

0

Engage Employee Referral

9.4%

3

Other UM Employee Referral

21.9%

7

Friend Referral

15.6%

5

Doctor's office

12.5%

4

Other (please specify)

5

answered question

32

skipped question

0

Response Percent

Response Count

Almost daily

15.6%

5

1-3 times a week

6.3%

2

1-3 times a month

21.9%

7

1-3 times a year

28.1%

9

Less than once a year

28.1%

9

answered question

32

skipped question

0

9. On average, how often do you visit the Engage website?

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10. How many times have you participated in clinical research studies in the past year? Response

Response

Percent

Count

Once

9.4%

3

2-5 times

18.8%

6

More than 5 times

0.0%

0

Never

71.9%

23

answered question

32

skipped question

0

Response Percent

Response Count

Finding general information about clinical research

26.9%

7

Searching for specific studies

34.6%

9

Browsing for studies

65.4%

17

Other (please specify)

6

answered question

26

skipped question

6

11. What do you use the Engage site for? (Select all that apply)

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12. Which of the following apply to you? (Select all that apply) Response

Response

Percent

Count

I have a medical condition

40.6%

13

A loved one has a medical condition

31.3%

10

I am interested in the way clinical research works

37.5%

12

68.8%

22

I am interested in being compensated for participation in clinical research

59.4%

19

None of the above

9.4%

3

answered question

32

skipped question

0

Response Percent

Response Count

Once

12.5%

4

2-5 times

12.5%

4

More than 5 times

3.1%

1

Never

71.9%

23

answered question

32

skipped question

0

I am interested in helping to advance medical care

13. How many times have you volunteered to participate in research studies through Engage?

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14. How many times have you volunteered to participate in research studies outside Engage? Response

Response

Percent

Count

Once

12.5%

4

2-5 times

15.6%

5

More than 5 times

3.1%

1

Never

68.8%

22

answered question

32

skipped question

0

15. What types of information are important for you to know before you participate in a study? (check all that apply) Response Percent

Response Count

Compensation

68.8%

22

Time commitment

71.9%

23

Health Risk

75.0%

24

Procedures (psychological questioning, drawing blood, etc.)

78.1%

25

Potential outcomes - how the study might benefit science/people with the condition

68.8%

22

Other (please specify)

0

answered question

32

skipped question

0

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16. In general, how comfortable are you giving out personal and medical information online? Response

Response

Percent

Count

Very comfortable

37.5%

12

Somewhat comfortable

46.9%

15

Somewhat uncomfortable

12.5%

4

Very uncomfortable

3.1%

1

answered question

32

skipped question

0

Response Percent

Response Count

Search by condition

28.1%

9

Search by keyword

34.4%

11

Studies seeking healthy volunteers

21.9%

7

View studies added in the last 30 days

15.6%

5

Not applicable

37.5%

12

answered question

32

skipped question

0

17. Which of Engage's search options do you normally choose?

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18. Please indicate the degree to which you agree with the following questions.

Agree

I am able to navigate through the Engage site without any problems. I am able to find general information about clinical research. I am able to find this general information easily. Enrolling in the Engage registry was easy.

40.6% (13) 43.8% (14) 43.8% (14) 34.4% (11)

Somewhat agree

Neutral

Somewhat disagree

Disagree

N/A

Response Count

31.3% (10)

9.4% (3)

6.3% (2)

0.0% (0)

12.5% (4)

32

25.0% (8)

9.4% (3)

6.3% (2)

0.0% (0)

15.6% (5)

32

31.3% (10)

9.4% (3)

3.1% (1)

3.1% (1)

9.4% (3)

32

15.6% (5)

15.6% (5)

6.3% (2)

3.1% (1)

25.0% (8)

32

I am able to understand the language of the details of a study.

43.8% (14)

21.9% (7)

6.3% (2)

9.4% (3)

3.1% (1)

15.6% (5)

32

I am able to find the information important to considering participation in a study.

37.5% (12)

25.0% (8)

12.5% (4)

6.3% (2)

3.1% (1)

15.6% (5)

32

I am able to search on the Engage site easily.

37.5% (12)

28.1% (9)

12.5% (4)

6.3% (2)

6.3% (2)

9.4% (3)

32

answered question

32

skipped question

0

19. If you selected disagree or somewhat disagree for any of the above questions, please explain why. Response Count 5 answered question

5

skipped question

27

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20. What do you like best about Engage? Response Count 12 answered question

12

skipped question

20

21. What would you like improved? Response Count 9 answered question

9

skipped question

23

22. Any other comments? Response Count 3 answered question

3

skipped question

29

23. If you are willing to let us contact you again later regarding the usability of Engage, please enter your e-mail address: Response Count 13 answered question

13

skipped question

19

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19.


20.

21.


22.

23. If you are willing to let us contact you again later regarding the usability of Engage, please enter your e-mail address: 13 responses


engage: U – M Clinical Research Appendix B: Survey Delivery Methods B.1. Pop-up on Engage Website For the duration of the survey, the following popup appeared when users navigated to the Engage site main page at http://www.umengage.org

Figure B.1.: Survey pop-up on Engage's main page (http://www.umengage.org) B.2. Links on Engage Website In addition to the pop-up, we had an item added on the right sidebar of the following pages: The Main Page - http://www.umengage.org (see figure B.2.) Volunteer for Research - http://www.umengage.org/vol/index.htm Find Studies - http://www.umengage.org/bulletin/index.htm

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engage: U – M Clinical Research

Figure B.2.: The sidebar on the main page, including the temporary link to the Volunteer Survey.

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engage: U – M Clinical Research B.3. E-mail sent to a subset of current Engage users Dear Engage users, Engage is working with the School of Information to improve our site. A team of students from SI have created a survey to analyze the usability of Engage based on the thoughts of our current users. Please help them as we hope to improve our site for you. Survey: http://www.surveymonkey.com/s.aspx?sm=PhU_2bk5Bo3hj25aVvFzcfiQ_3d_3d

*Taking this survey is completely voluntary and will not be used for research purposes, but merely to improve the usability of the website.* Thank you, Molly and the Engage Staff

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engage: U – M Clinical Research Appendix C: Engage User Statistics (From Registry)

TYPE Total Staffs Who Manage Studies Total Volunteers Total Volunteers Who Are UM Employees Total Volunteers with Woman Registry ID Total Volunteers Who Prvoide Careweb Access age < 18 Total Volunteers Who Prvoide Careweb Access age between 18 - 25 Total Volunteers Who Prvoide Careweb Access age between 26 - 35 Total Volunteers Who Prvoide Careweb Access age between 36 - 50 Total Volunteers Who Prvoide Careweb Access age between 51 - 65 Total Volunteers Who Prvoide Careweb Access age > 65 Total Volunteers Who are Fluent in English age < 18 Total Volunteers Who are Fluent in English age between 18 - 25 Total Volunteers Who are Fluent in English age between 26 - 35 Total Volunteers Who are Fluent in English age between 36 - 50 Total Volunteers Who are Fluent in English age between 51 - 65 Total Volunteers Who are Fluent in English age > 65 Male age < 18 Male age between 18-25 Male age between 26-35 Male age between 36-50 Male age between 51-65 Male age > 65 Female age < 18 Female between 18-25 Female between 26-35 Female between 36-50 Female between 51-65 Female age > 65 Total Volunteers Who are Children Total Volunteers with this Race age < 18: Asian Total Volunteers with this Race age < 18: Other Race Total Volunteers with this Race age < 18: White or Caucasian Total Volunteers with this Race age < 18: Black or African American Total Volunteers with this Race age between 18 - 25: Native Hawaiian or Other Pacific Islander Total Volunteers with this Race age between 18 - 25: Asian

TOTAL 129 1458 808 93 10 64 89 117 89 24 37 447 336 327 220 67 31 131 73 64 50 22 20 319 265 267 171 45 51 3 4 44 5 2

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45


engage: U â&#x20AC;&#x201C; M Clinical Research Total Volunteers Total Volunteers Total Volunteers American Total Volunteers Alaska Native Total Volunteers Pacific Islander Total Volunteers Total Volunteers Total Volunteers Total Volunteers American Total Volunteers Alaska Native Total Volunteers Pacific Islander Total Volunteers Total Volunteers Total Volunteers Total Volunteers Alaska Native Total Volunteers American Total Volunteers Total Volunteers Total Volunteers American Total Volunteers Alaska Native Total Volunteers Total Volunteers Total Volunteers Total Volunteers Total Volunteers Total Volunteers Latino Total Volunteers Total Volunteers Latino Total Volunteers Total Volunteers Latino

with this Race age between 18 - 25: Other Race with this Race age between 18 - 25: White or Caucasian with this Race age between 18 - 25: Black or African

12 358 39

with this Race age between 18 - 25: American Indian or

3

with this Race age between 26 - 35: Native Hawaiian or Other

1

with this with this with this with this

18 2 282 32

Race age between 26 - 35: Asian Race age between 26 - 35: Other Race Race age between 26 - 35: White or Caucasian Race age between 26 - 35: Black or African

with this Race age between 26 - 35: American Indian or

8

with this Race age between 36 - 50: Native Hawaiian or Other

1

with this with this with this with this

8 2 286 8

Race age between 36 - 50: Asian Race age between 36 - 50: Other Race Race age between 36 - 50: White or Caucasian Race age between 36 - 50: American Indian or

with this Race age between 36 - 50: Black or African

32

with this Race age between 51 - 65: Asian with this Race age between 51 - 65: White or Caucasian with this Race age between 51 - 65: Black or African

4 205 12

with this Race age between 51 - 65: American Indian or

2

with this Race age > 65: Asian with this Race age > 65: White or Caucasian with this Race age > 65: Black or African American with this Ethnicity age < 18 : Hispanic or Latino with this Ethnicity age < 18 : Not Hispanic or Latino with this Ethnicity age between 18 - 25: Not Hispanic or

1 64 3 4 47 424

with this Ethnicity age between 18 - 25: Hispanic or Latino with this Ethnicity age between 26 - 35: Not Hispanic or

26 319

with this Ethnicity age between 26 - 35: Hispanic or Latino with this Ethnicity age between 36 - 50: Not Hispanic or

19 322

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engage: U â&#x20AC;&#x201C; M Clinical Research Total Volunteers Total Volunteers Latino Total Volunteers Total Volunteers

with this Ethnicity age between 36 - 50: Hispanic or Latino with this Ethnicity age between 51 - 65: Not Hispanic or

9 219

with this Ethnicity age between 51 - 65: Hispanic or Latino with this Ethnicity age > 65 : Not Hispanic or Latino

2 67

Figure C1: Age and Gender Distribution of Engage volunteers, recorded in the Engage Registry

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SI622 Survey Report  

This is a report of the results of a survey regarding the usability of the U of M Engage website.

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