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How to Use Digital and Social Media to Recruit Participants into Research Studies

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This slide deck was presented at the 2017 ACR/ARHP Annual Meeting. It provided a general overview of the topic and addresses the following learning objectives include: (1) Understand what populations can be recruited online, (2)
Describe successful recruitment strategies, (3) Understand the components of a digital participant recruitment strategy, (4)
Evaluate digital recruitment messages, and (5) Understand regulations, guidelines and ethics relevant to digital participant recruitment.

Published in: Health & Medicine
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How to Use Digital and Social Media to Recruit Participants into Research Studies

  1. 1. How to use Digital and Social Media to Recruit Study Participants Online Katja Reuter, PhD Director of Digital Innovation and Communication, Southern California Clinical and Translational Science Institute (SC CTSI), University of Southern California (USC) Assistant Professor of Clinical Preventive Medicine, Institute for Health Promotion and Disease Prevention Research, Department of Preventive Medicine, Keck School of Medicine of USC
  2. 2. Presenter Disclosure Information Katja Reuter, PhD Southern California Clinical and Translational Science Institute University of Southern California Financial Disclosure No relevant financial relationships exist.
  3. 3. About the Digital Scholar Training Initiative
  4. 4. Topics 1. Understand what populations can be recruited online 2. Describe successful recruitment strategies on Twitter, Facebook, and Google 3. Understand components of a digital participant recruitment strategy 4. Evaluate digital recruitment messages 5. Understand regulations, guidelines and ethics relevant to digital participant recruitment
  5. 5. Recommended reading Checklist Template language
  6. 6. Clinical Trial Process
  7. 7. Social Media Touch Points Engagement, Education, and Recruitment Retention Dissemination of Study Results
  8. 8. Seven-in-Ten Americans Use Social Media http://www.pewinternet.org/fact-sheet/social-media/
  9. 9. Social Media User Base Age Race Gender Education Pew Research Center. Surveys conducted 2005-2018. http://www.pewinternet.org/fact-sheet/social-media/ Income Community
  10. 10. Platform Popularity http://www.pewinternet.org/fact-sheet/social-media/
  11. 11. Misconceptions People don’t want to read about clinical research online. Actually: The use of the Internet as a top source for clinical research information has increased significantly (46% in 2013). [Ref. Report on clinical trial information seekers. Perceptions and insights study. The Center for Information & Study on Clinical Research Participation; 2013.; Harris-Interactive, 2004.] Nearly 60% Americans say they sought health information online in the past year. [Ref. Pew Research, 2013] More than 40% of the public reports that they have used social media to learn about clinical research. [Ref. Harris-Interactive, 2004]
  12. 12. The Digital Patient Ref. Pew Internet Research. Social Media Usage: 2005-2015. Pew Research Center, October 2015.; http://www.cdwcommunit.com/perspectives/expert-perspectives/todays-digital-patient/
  13. 13. Topics 1. Understand what populations can be recruited online 2. Describe successful recruitment strategies on Twitter, Facebook, and Google 3. Understand components of a digital participant recruitment strategy 4. Evaluate digital recruitment messages 5. Understand regulations, guidelines and ethics relevant to digital participant recruitment
  14. 14. Leverage the Spoke-Hub Model Your Study Web Page is the Hub
  15. 15. Your Study Web Page is the Hub Leverage the Spoke-Hub Model H U B Your Study Web Page v Online Search
  16. 16. Example of Hub: Clinical Trial Web Page Ref. http://clinicaltrials.keckmedicine.org
  17. 17. Effectiveness of social media for study participant recruitment
  18. 18. Social Media Effectiveness R E A D I N G
  19. 19. Use of Google Adwords for study participant recruitment
  20. 20. Stroke Study P R E - R E A D I N G
  21. 21. Anthony Kim, MD Assistant Professor of Neurology and is Medical Director of the UCSF Stroke Center “We were surprised to see that tens of thousands of people were regularly ‘asking’ a search engine about stroke- related symptoms in many cases shortly after the onset of symptoms. In fact, every month, about 100 people were finding our study website by entering the query: “Am I having a stroke?” directly into their Google search box.” Perspective http://digitalmediaandscience.wordpress.com/2012/10/31/am-i-having-a-stroke-connecting-with-patients-in- new-ways-as-they-search-for-health-information-online/
  22. 22. Recruiting Patients Online http://digitalmediaandscience.wordpress.com/2012/10/31/am-i-having-a-stroke-connecting-with-patients-in-new-ways-as-they-search- for-health-information-online/
  23. 23. Topics 1. Understand what populations can be recruited online 2. Describe successful recruitment strategies on Twitter, Facebook, and Google 3. Understand components of a digital participant recruitment strategy 4. Evaluate digital recruitment messages 5. Understand regulations, guidelines and ethics relevant to digital participant recruitment
  24. 24. Social Media Listening/Monitoring  Listen to ongoing conversations about the study disease or related aspects to learn… First listen, … Who talks about the disease area? What do they say? Who are the influencers in the disease community? Consider the voices of patients, physicians, disease advocates, disease foundations, researchers, medical centers
  25. 25. Tool Example: The Disease Hashtag Project Ref. http://www.symplur.com/healthcare-hashtags/diseases/
  26. 26. Example: #RheumatoidArthritis Ref. https://www.symplur.com/healthcare-hashtags/rheumatoidarthritis/
  27. 27. Example: #RheumatoidArthritis Ref. https://www.symplur.com/healthcare-hashtags/rheumatoidarthritis/
  28. 28. Defining: Hashtags A hashtag is a word or phrase preceded by a hash or pound sign (#) and used to identify messages on a specific topic – developed on Twitter and now used on other platforms such as Instagram and Facebook.
  29. 29. Tool Example: Social Mention Ref. http://www.socialmention.com/
  30. 30. User Conversations Across Platforms
  31. 31. User Conversations Across Platforms
  32. 32. Contributing on Social Media  Share links: Photos, videos, infographics, tips, novel information, interesting facts, stats, quotes related to your study  Answer questions and provide value, e.g., share resources -- re-use existing content if possible (guide to managing post-surgery pain or infographic on new treatment option)  Share random thoughts, e.g., Without clinical studies, medical treatment would always remain the same. Thanks to all of those who participate.  Promote, encourage, and support others  Target specific populations to increase your relevance
  33. 33. Share More than Your Research Publications Research Data & Negative Results Research Articles (Manuscripts) Presentations Images, Video, Podcasts Perspective/Thought leadership Software Code
  34. 34. Use Media such as Images and Video Ref. 7
  35. 35. Asking Social Media Users for Help  Ask for help or to do something, e.g., Then ask, … complete a survey, contact the study team, visit a web page, share feedback on proposed study design, spread the word, participate in a clinical study, …
  36. 36. Promoting Clinical Research Digitally Digital platform Organic Advertising Twitter Yes No Facebook Yes Yes (Approval required) Youtube Yes Yes (Approval required) Pinterest Yes No Instagram Yes Yes (Approval required) Google Search Yes Yes (Approval required) Wordpress Yes Yes (Approval required) Tumblr Yes Yes (Approval required) Limited overview Based on platform posting guidelines, Aug 2017
  37. 37. Targeting https://blog.adstage.io/2013/08/23/how-to-target-facebook-ads-to-your-audience/
  38. 38. Targeting https://blog.adstage.io/2013/08/23/how-to-target-facebook-ads-to-your-audience/
  39. 39. Targeting https://blog.adstage.io/2013/08/23/how-to-target-facebook-ads-to-your-audience/
  40. 40. Topics 1. Understand what populations can be recruited online 2. Describe successful recruitment strategies on Twitter, Facebook, and Google 3. Understand components of a digital participant recruitment strategy 4. Design and evaluate digital recruitment messages 5. Understand regulations, guidelines and ethics relevant to digital participant recruitment
  41. 41. Digital Information about Clinical Studies: Checklist  The creator of digital/social media content is responsible for it.  Abide by institution’s media guidelines.  Ensure that the study sponsor is informed of your digital/social media activity.  Refrain from providing significant details of any clinical study – focus on basic study information. Suggestion: Link digital media content to study page with more information  Beware of proprietary information. [Ref. 13] C H E C K L I S T
  42. 42. [Ref. 13]  Avoid making claims of treatment efficacy or side effects. Use disclaimers to reduce risk.  Avoid disclosure of preliminary results or non-public information.  Bloggers involved in the study should not write about trial or drug, device, or treatment (could be viewed as advertising).  Avoid using social media for eligibility screening, refer to institution and study team. Digital Information about Clinical Studies: Checklist C H E C K L I S T
  43. 43. E X E R C I S E Developing Recruitment Messaging You want to promote a study that focuses on the drug nivolumab to see whether it may help to prevent relapsing in patients with acute myeloid leukemia in remission after chemotherapy. Relapse remains the main failure of treatment in patients with acute leukemia after chemotherapy. Nivolumab has already shown impressive immune therapy results in patients with melanoma, kidney cancer, and non-small-cell lung cancer. You are trying to enroll men and women 18+. • Trial length is 2 years. • Number of visits: 1 every 2 weeks • Procedures: Blood counts, bone marrow exam, toxicity test • Compensation: $150 • Medical cost coverage: Drug at no cost; standard follow-up insurance
  44. 44. #1 #2 #3 Would you use any of these Twitter messages for recruitment into a clinical trial?
  45. 45. Would you use any of the following Facebook messages?
  46. 46. [Ref. 13]  State new treatment, drug, device as investigational/in testing.  Avoid coercion, the practice of persuading someone to do something by using force or threats.  Don’t imply favorable outcomes or post claims regarding safety, e.g., better treatment, better chances to be cured, safe treatment.  Don’t promise free medical treatment.  Don’t emphasize payment for participants, e.g., participants may be compensated for their time Digital Recruitment Messages FDA and IRB Guidelines Apply ges C H E C K L I S T
  47. 47. Tracking Key Performance Indicators Examples: Retweets/Repins Shares Replies/comments Followers Likes Social media analytics Initiation of Contact with Study Team Social Media Engagement Link Engagement Study Page Engagement Impressions Clicks Examples: Sessions Time spent on page Pageviews Social media built-in analytics, e.g., Twitter, Facebook, Pinterest Social media analytics; Buffer; Hootsuite; Tweetdeck; Kuku.io; Link shortening services, e.g., Ow.ly M E A S U R E M E N T T O O L S Google Analytics Google Analytics; CTMS
  48. 48. Topics 1. Understand what populations can be recruited online 2. Describe successful recruitment strategies on Twitter, Facebook, and Google 3. Understand components of a digital participant recruitment strategy 4. Evaluate digital recruitment messages 5. Understand regulations, guidelines and ethics relevant to digital participant recruitment
  49. 49. Passive vs. Active Recruitment “Distributing recruitment materials (ads, posters, flyers) with the aim of attracting potential participants to contact the research team for more information and for consideration of enrollment.” PASSIVE RECRUITMENT ACTIVE RECRUITMENT “Occurs when research staff members approach and interact with specific individuals with the aim of enrolling them in research, usually on the basis of knowledge of characteristics that would make them suit- able candidates for particular trials.” Gelinas et al. (2017) Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations, The American Journal of Bioethics, 17:3, 3-14,.
  50. 50. Ethical Considerations & Regulatory Challenges • Federal and state laws govern social media recruitment activities • Lack of specific regulatory guidance • IRBs may or may not have policies on social media recruitment • Among existent policies there is no clear consensus Challenge: Social media requires applying legal and ethical norms sensitively in a context that may be unfamiliar to investigators and IRBs.
  51. 51. Tools to Assess and Manage Social Media Recruitment Application Nonexceptionalism methodology
  52. 52. Apply Nonexceptionalism Methodology “In short, we suggest striving to normalize social media recruitment techniques while remaining sensitive to their potentially novel aspects by, • first, making their resemblance to more traditional offline recruitment explicit; • second, applying the appropriate ethical considerations and scrutiny; and • third, determining whether social media recruitment differs from offline recruitment in ways that warrant further review.” Gelinas et al. (2017) Using Social Media as a Research Recruitment Tool: Ethical Issues and Recommendations, The American Journal of Bioethics, 17:3, 3-14,.
  53. 53. Tools to Assess and Manage Social Media Recruitment Application Privacy-by-Design Framework
  54. 54. Apply Privacy-by-Design Framework Bender et al. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment. J Med Internet Res 2017;19(4):e104
  55. 55. Apply Privacy-by-Design Framework Bender et al. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment. J Med Internet Res 2017;19(4):e104
  56. 56. Case study 1: Exercise “Investigator A wishes to recruit from a Facebook cancer patient support group to increase enrollment for her clinical trial, which holds the prospect of direct benefit for participants. The Facebook support group is “open,” that is, there are no restrictions to joining the support group, no registration, no requirement to post certain minimal information, and no assumption of privacy or that all members online are afflicted with cancer. Anyone, including the research team, can identify and contact members of the group through it. Some members of the IRB wonder whether contacting people in this way would be ethically advisable, given that the group is formed around a disease category and not specifically geared toward clinical research, and that members of the group are likely to be vulnerable and may feel embarrassed, stigmatized, or alienated by recruitment advances.” Gelinas et al. (2017)
  57. 57. Case study 1: Solution Approach How do you suggest evaluating respect for privacy and investigator transparency, and the proposed social media recruitment in general? NORMALIZING 1. More familiar offline approach of the proposed situation: e.g., physician-investigator in a clinical setting attending an open oncology patient support group.
  58. 58. Case study 1: Solution Approach Addressing Social Media Platform Situation A. Facebook group with moderator: Ask moderator for permission B. Facebook group without moderator: Fewer or less stringent restrictions may apply if groups is open and less personal and intimate where individuals can choose not to respond (vs. at in-person support groups where the person is physically present and may feel compelled to respond) C. For both A and B: • Record any negative comments or information shared from Facebook members, tabulate that information, and report back to the IRB at continuing review or earlier. • Transparency: Be forthright that they are accessing the group in their capacity as researchers, not patients, as well as about the aim and details of the study, its risks and benefits. • Privacy: Protect personal information of the site’s members; refrain from disclosing anything that would allow personal health information to be inferred about members of the group, including the fact that they are in or are eligible for the research in question.
  59. 59. Case study 1: Solution Approach Determining Privacy Expectations A. The fact that some members of the site may feel annoyed or embarrassed by recruitment advances does not make recruitment unethical. B. Use website policy and terms of use: Determine whether user annoyance is based on a reasonable expectation that would be violated by the recruitment activity. Is the site to be used expressly and only for purposes that do not include recruitment or research?
  60. 60. Case study 2: Exercise “Investigator B wishes to use online “banner ads” to deliver customized messages for specific individuals or groups based on their online activity, to increase targeted recruitment for his clinical trial. In the first instance, he wishes to place banner ads on a Facebook media group for expectant mothers. In the second instance, he wishes to use banner ads to deliver customized online messages for specific individuals or subgroups of individuals based on their search and browsing history, online profile information, and the like.” How do you suggest evaluating respect for privacy and investigator transparency, and the proposed social media recruitment in general? Gelinas et al. (2017)
  61. 61. Case study 2: How do you suggest evaluating respect for privacy and investigator transparency, and the proposed social media recruitment in general? NORMALIZING 1. More familiar offline approach of the proposed situation: e.g., placing flyers in physical spaces likely to be frequented by the potential study population (e.g., placing flyers for a study on depression in pregnancy in obstetrical offices). 2. Note: The social media site is, while the obstetrical office is not, tracking and keeping a record of who looks at the ad or expresses interest in it. Does this difference demand greater IRB scrutiny?
  62. 62. Case study 2: Solution Approach Application to Social Media Platform A. Tracking data is proprietary: Personal search information on which these ads are based is part of an algorithm used by the site or advertising company and is generally not shared with investigators directly. • Refer to terms of service of website and state (if applicable) that tracking and data mining activities is publicly disclosed to potential users before they agree to join. • Confirm (if applicable) that no information relating to an individual’s online activity will be collected and retained by the investigator, and that the language of the banner ad proposed is appropriate prior to approval. • Exception: The IRB needs to be informed if the the research team intends to track responses to its ad in ways that would not normally occur over Facebook.
  63. 63. Case study 2: Solution Approach Addressing Social Media Platform Situation B. Permission: Get permission of a moderator from site for advertisement or other authority connected with the site (similar to permission of a doctor for placing posters in his/her office) Note: On many social media platforms, ads are moderated. The approval process is built in.
  64. 64. Case study 3: Solution Approach Assessing “creepiness” Some people may find the targeting of individual pregnant women via customized banner ads “creepy,” or “creepier” than the targeting of pregnant women generally at an office. A. “It is doubtful that the mere perception of creepiness has intrinsic ethical weight or would demand greater protection for social media users. Overall conclusion: Use of banner ads will typically not involve additional research risks for potential participants and indeed will be analogous to other offline recruitment strategies, such as the growing use of algorithms to scan medical records to identify patients who may be eligible for particular studies.
  65. 65. Case study 3: Exercise “Investigator C is a clinical investigator conducting HIV research. To expedite enrollment, he considers using a location-based social and dating application directed toward gay and bisexual men. The platform’s terms of service put no restrictions on who may or may not join, and are silent on whether the application may be used for research purposes, neither prohibiting nor expressly per- mitting it. Investigator C downloads the application to his smartphone, where he creates a profile that gives him access to information from other users, and observes that User M has a profile identifying him as age 29, gay, HIVC, and living in ZIP code 77777. This information suggests that User M may satisfy the eligibility criteria for Investigator C’s clinical trial. Investigator C wonders if it would be permissible for him to contact User M to see if he is interested in enrolling in the protocol.” Gelinas et al. (2017)
  66. 66. Case study 3: How do you suggest evaluating respect for privacy and investigator transparency, and the proposed social media recruitment in general? NORMALIZING 1. More familiar offline approach of the proposed situation: e.g., approaching individuals leaving a bar frequented by gay men. 2. Note: Whether there is knowledge of disease status matters ethically. Difference in degree of certainty investigators have about whether individual is HIV+ and meet the inclusion criteria for the study. User M has self-identified as HIV+ on his application profile.
  67. 67. Case study 3: Solution Approach Addressing Social Media Platform Situation A. Restricted of platform: Address the fact that the willingness of users to disclose their HIV status or other sensitive health information may be based on an assumption that the site is restricted to romantic uses. • Refer to the aim and accepted use of the specific application to argue whether users are in fact justified in thinking that only potential romantic partners will view their profile. • If the application is exclusively advertised and used as a romantic dating service only, users may have a reasonable expectation that researchers will not view their profile. • Weigh potential risk against value of the research and the prospects for seeing it to completion using social media-based recruitment.
  68. 68. Case study 3: Solution Approach Addressing Social Media Platform Situation B. Non-restricted of platform: I.e., site policy or practice do not limit use to romantic interactions • Point out that users tend to encounter coworkers, neighbors, people (not all of whom are looking for dates with the user—the objection raises much less concern). • Point out that concerned users may easily choose not to disclose their HIV status in their profile. • Transparency: The application profile created by Investigator C should be accurate and not misleading. Make it clear why research team is contacting users of the application (for the purpose of research, rather than for social reasons). Conclusion: As long as users do not have a valid expectation that researchers will not view their profile, and as long as researchers treat personal information accessed over the application discreetly and confidentially, this recruitment activity can be ethically acceptable.
  69. 69. What IRB Needs to Know Examples of social media content for IRB review:  Layout mockup of the web page, including text and any links provided to the potential participants  Text of Google Search ad and a static view of the page to which the ad will direct traffic  Text of Facebook post or ad and any images and links that are included If the social media content is visible to potential study participants, you should assume it will need IRB approval. Let IRB know that your social media recruitment strategy and materials will comply with existing IRB and applicable FDA regulations related to human subject research. This means adherence to 21 CFR §56 as explained in the FDA’s longstanding document titled, “Recruiting Study Subjects – Information Sheet, Guidance for Institutional Review Boards and Clinical Investigators”.
  70. 70. Protection Against HIPAA Violations and Inappropriate Posting 1. Pay attention to Protected Health Information (PHI) 1. Draft response messages to manage comments that include PHI, include them in your IRB protocol for review Examples: On Twitter: Dear [@mention]: To protect your privacy, we suggest you delete your message. Please contact us directly URL/or phone number On Facebook: Dear [FIRST NAME]: Thank you for your interest in our clinical study at Keck Medicine of USC. To ensure the privacy and confidentiality of [your or your family member’s] health information, we had to delete your comment. To help answer your question, please contact us directly via [email], text or phone [PHONE NUMBER]. We’d be happy to give you a call.
  71. 71. Managing Active Study Participants  Help them understand that sharing details about their participation online can …  distort the results of the study and essentially cause the trial to fail,  influence how other people perceive or report their own symptoms, making it hard to tell whether a given drug or treatment is working,  unblind the study, i.e., if neither the participants nor the clinical trial site team knows who is on an active drug or a placebo, some participants may be taking a placebo. Information you share could lead them to report symptoms that they are not actually experiencing, and  be misinterpreted by the public, journalists and others.  TIPS FOR GETTING IT RIGHT
  72. 72. Template Language (Part 1)  Do discuss your experience confidentially with your family and other people who are close to you.  Do talk with your family doctor and other healthcare providers. It’s important to let them know that you are in a clinical trial.  Do ask your clinical trial team to provide guidance about where to obtain reliable educational material online.  Do keep a journal or take notes on your cell phone so you can make a list of things to talk about with your clinical trial doctor and study team at your clinical trial. C H E C K L I S T
  73. 73. Template Language (Part 2)  Don’t talk publicly, including online, about your participation in a clinical trial.  Don’t post online including on social media about your experience in the trial, including about side effects or about how you think the drug is working.  Don’t solicit trial advice or information from online friends or people other than the primary investigator and study team at your clinical trial site.  Don’t respond to questions or comments online related to the trial you’re involved in.  If you do see study-related posts online, please tell the study team. C H E C K L I S T
  74. 74. Contact information Email: katja.reuter@usc.edu Twitter: @dmsci Blog: https://digitalmediaandscience.wordpress.com Katja Reuter, PhD Online R es our c es http://sc-ctsi.org/digital-scholar/

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