Maintenance Notice

Due to necessary scheduled maintenance, the JMIR Publications website will be unavailable from Monday, March 11, 2019 at 4:00 PM to 4:30 PM EST. We apologize in advance for any inconvenience this may cause you.

Who will be affected?


Currently submitted to: JMIR Medical Informatics

Date Submitted: Jul 31, 2019
Open Peer Review Period: Aug 5, 2019 - Sep 30, 2019
(closed for review but you can still tweet)

NOTE: This is an unreviewed Preprint

Warning: This is a unreviewed preprint (What is a preprint?). Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn (a note "no longer under consideration" will appear above).

Peer-review me: Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period (in this case, a "Peer-Review Me" button to sign up as reviewer is displayed above). All preprints currently open for review are listed here. Outside of the formal open peer-review period we encourage you to tweet about the preprint.

Citation: Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author).

Final version: If our system detects a final peer-reviewed "version of record" (VoR) published in any journal, a link to that VoR will appear below. Readers are then encourage to cite the VoR instead of this preprint.

Settings: If you are the author, you can login and change the preprint display settings, but the preprint URL/DOI is supposed to be stable and citable, so it should not be removed once posted.

Submit: To post your own preprint, simply submit to any JMIR journal, and choose the appropriate settings to expose your submitted version as preprint.

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Perceived Level of Interest in Health Research from Patients Who Use Social Networking Sites: A Secondary Data Analysis of HINTS Data

  • Joyce Balls-Berry; 
  • Ian Marigi; 
  • Emily Valentin-Méndez; 
  • Liaa Ferede; 
  • Numra Bajwa; 
  • Melody Ouk; 
  • Felicity Enders; 
  • Alexandra Greenberg-Worisek; 



There is a need to address the factors associated with underrepresentation of socioeconomically disadvantaged groups in research participation. The growth of social networking sites over the past decade provides an opportunity to engage and educate patients from underrepresented populations about health information and research.


To use the National Cancer Institute’s Health Information National Trends Survey (HINTS) to determine if there is an association between social networking site use and interest in patient engagement in research, and to identify sociodemographic disparities between social networking site use and interest in patient engagement in research.


Data from the 2013 administration of HINTS were analyzed. Descriptive statistics were generated for all items, and bivariate analyses were conducted between sociodemographic variables and interest in participating in patient engaged research. Multivariate logistic regression modeling was used to examine the effects of each independent variable on respondent interest in patient-engaged research.


There was a statistically significant association between social networking site use for reading/sharing a medical topic (P< .001) and being interested in patient engagement in research, after adjusting for relevant covariates (OR=3.17; 95% CI: 2.04, 4.90). Respondents who had some college education (OR=3.13; 95% CI: 1.56, 6.27) or were college graduates (OR=3.98; 95% CI: 2.19, 7.24) had higher odds of interest in patient engagement in research, as compared to respondents with less than a high school education (P=.002). Among respondents who indicated using social networking sites for medical topics, males (P=.006) showed increased interest in patient engagement in research, as compared to females (OR=1.56; 95% CI: 1.13, 2.17). Interest in patient engagement in research did not differ significantly between different races/ethnicities, irrespective of their social networking site use (P<.001).


The relationship found between social networking site use and increased interest in patient engagement in research gives researchers an avenue to overcome barriers that have limited participation among different groups. Our study found no significant difference in this association among race/ethnicity, suggesting that social networking could be a tool to address the underrepresentation of certain groups regarding participation in research.


Please cite as:

Balls-Berry J, Marigi I, Valentin-Méndez E, Ferede L, Bajwa N, Ouk M, Enders F, Greenberg-Worisek A

Perceived Level of Interest in Health Research from Patients Who Use Social Networking Sites: A Secondary Data Analysis of HINTS Data

JMIR Preprints. 31/07/2019:15714

DOI: 10.2196/preprints.15714


Download PDF

Request queued. Please wait while the file is being generated. It may take some time.

© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.