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

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

Presenter Disclosure Information

Katja Reuter, PhD

Southern California Clinical and Translational Science Institute

University of Southern California

Financial Disclosure

No relevant financial relationships exist.

About the Digital Scholar

Training Initiative

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

Recommended reading

Checklist

Template language

Clinical Trial Process

Social Media Touch Points

Engagement,

Education, and

Recruitment

Retention

Dissemination of

Study Results

Seven-in-Ten Americans Use Social Media

http://www.pewinternet.org/fact-sheet/social-media/

Social Media User Base

Age Race

GenderEducation

Pew Research Center. Surveys conducted 2005-2018. http://www.pewinternet.org/fact-sheet/social-media/

Income Community

Platform Popularity

http://www.pewinternet.org/fact-sheet/social-media/

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]

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/

Topics



and Google


strategy




Leverage the Spoke-Hub Model

Your Study Web Page is the Hub

Your Study Web Page is the Hub

Leverage the Spoke-Hub Model

H U B

Your Study

Web Page

v

Online

Search

Example of Hub: Clinical Trial Web PageRef. http://clinicaltrials.keckmedicine.org

Effectiveness of social media for study participant recruitment

Social Media Effectiveness

R E A D I N G

Use of Google Adwords for study participant recruitment

Stroke Study

P R E - R E A D I N G

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/

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/

Topics



and Google


strategy




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

Tool Example: The Disease Hashtag Project

Ref. http://www.symplur.com/healthcare-hashtags/diseases/

Example: #RheumatoidArthritis

Ref. https://www.symplur.com/healthcare-hashtags/rheumatoidarthritis/

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.

Tool Example: Social Mention

Ref. http://www.socialmention.com/

User Conversations Across Platforms

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

Share More than Your Research Publications

Research Data & Negative Results

Research Articles (Manuscripts)

Presentations

Images, Video, Podcasts

Perspective/Thought leadership

Software Code

Use Media such as Images and Video

Ref. 7

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,

…

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

Targeting

https://blog.adstage.io/2013/08/23/how-to-target-facebook-ads-to-your-audience/

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and Google


strategy

4. Design and evaluate digital recruitment messages



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

[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

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

#1

#2

#3

Would you use any of these Twitter

messages for recruitment into a clinical

trial?

Would you use any of the following Facebook

messages?

[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

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

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and Google


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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,.

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.

Tools to Assess and Manage

Social Media Recruitment Application

Nonexceptionalism

methodology

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,.

Tools to Assess and Manage

Social Media Recruitment Application

Privacy-by-Design

Framework

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

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)

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.

Case study 1: Solution ApproachAddressing 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.

Case study 1: Solution ApproachDetermining 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?


“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?


Case study 2:



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?

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.


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.


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.


“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.”


Case study 3:



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.



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.



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.

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”.

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.

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

Do:

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

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

Contact information

Email: [email protected]

Twitter: @dmsci

Blog: https://digitalmediaandscience.wordpress.com

Katja Reuter, PhD

O n l i n e R e s o u r c e shttp://sc-ctsi.org/digital-scholar/

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

Health & Medicine

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