Aug 20, 2012 - networking (LinkedIn, Doximity), social networking (Facebook, Google+), ... Advertising campaigns on Face book and MySpace have proved to be the ..... for your Business (http://www.socialmediasecretsforyourbusiness.com/.
Social Media in Patient Recruitment Dr.Sreedhar Tirunagari, Dada Hayath Shaik, Anil Golani
Introduction Patient recruitment is biggest challenge faced by pharmaceutical companies. As per estimates, poor patient enrolment has delayed the start of almost 85% of all human clinical trials. These delays can be costly reducing the length of a clinical trial by just one month & can generate an additional $40 million in sales revenue for a newly approved prescription drug. Because of this, patient recruitment has become a big business. Last year alone, $2.3 billion was spent on patient recruitment, and the size of this market is growing 15% annually. The rising cost of patient enrolment has prompted many sponsors, CROs, and patient recruitment firms to evaluate new strategies to improve recruitment outcomes. Increasingly, many of these organizations have turned to social media to bolster patient enrolment. Clinical trial recruitment by drug companies (sponsors) relies almost exclusively on print, radio, and in some instances, television advertising. However, in recent years, online clinical trial registries such as Clinicaltrials.gov and Centerwatch.com, company-sponsored clinical trials websites, and online patient recruitment companies have been added to the basket to bolster clinical trial enrolment. Advances in electronic data capture, clinical data management solutions, e-diaries, and interactive voice response systems have also helped in this aspect. Yet, recruiting patients into clinical trials continues to be a daunting challenge for most sponsors. Some of the reasons for the difficulties include: • Increasing complexities in clinical trial protocols, including patient type or more rigorous inclusion and exclusion criteria, increased number of patient visits, and hospitalizations, etc. • Fierce competition for the “same patient type” because of an overlap in development of experimental drugs in certain therapeutic areas, including oncology, diabetes, cardiovascular, and neurodegenerative diseases. • Negative publicity of experimental drugs because of recent highly publicized recalls and safety issues with approved products. • Generalized lack of public awareness about the availability and access to human clinical trials. What is Social Media? Social media comprise a number of online and mobile resources that provides a forum for the generation, sharing, and discussion of individualized ideas and content. Social media are commonly defined by specific applications and/or Web tools, most of which are widely accessible and free to use or available at minimal cost. These applications may be categorized by purpose, including such functions as professional networking (LinkedIn, Doximity), social networking (Facebook, Google+), recommending/filtering (Yelp, Delicious), media sharing (Flickr, YouTube), content production (blogs, Twitter), knowledge/information aggregation, and location-based services (Foursquare), among others. When integrated into health communication campaigns and activities, social media can encourage participation, conversation, and communities—all of which can help spread key messages, influence decision making, and promote behavior change. Social media also helps to reach people when, where, and how it’s convenient for them, which improves the availability of content and might influence satisfaction and trust in the health messages delivered. Social media is also a key tool in building awareness and credibility. Social media can help organizations achieve their after goals: • Disseminate health and safety information in a timelier manner. • Increase the potential impact of important messages. • Leverage networks of people to make information sharing easier. • Create different messages to reach diverse audiences. • Personalize health messages and target them to a particular audience. Page | 1
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Engage with the public. Empower people to make safer and healthier decisions.
Role of social media in clinical trials patient recruitment Social media is used as a powerful tool for recruiting study participants and a valuable communication channel in developing clinical research recruitment strategies. The use of the Internet to recruit patients for clinical trials is well-accepted in the clinical research industry, certainly in the U.S. and Canada, and increasingly considered in Europe, Asia-Pacific, and Latin America. Methods include creation of Web sites, online pre screeners, advertising (banner ads, paid search, and rich media), patient databases, direct e-mail, and more. There are numerous Internet methods for both generating response to clinical trial opportunities and for creating a “place” online where patients can visit. Social media is the latest evolution in these methodologies and has become a part of a vast and rapidly changing digital media ecosystem that includes many components. Some examples of these are: Websites, Mobile, Video, Organic Search, Paid Placement (search, social, and display advertisements), Gaming, Podcasts (audio), Email, and Social Media. Use of social media as a marketing tool leads to increased traffic, achieving targeted leads, generates higher conversations and Profitable Customer Relationship. Types of Social media used in patient recruitment i)Geo-Social Media Geo-social sites such as Foursquare and Face book Places are location-based social networking applications commonly used with mobile devices. These applications allow users to “check-in” in order to track, organize or communicate their physical location with friends. Users are also sometimes eligible for various promotions or deals when they check-in to a new location. Advantages of Geo-Social Media • Rising awareness at no cost – Unlike expensive television, radio or print campaigns, geo-social networking is often entirely free of cost and typically requires minimal routine maintenance. If someone checks-in at your site, it’s essentially a free endorsement from a trusted source. • Information spreads instantaneously – Like all social media networks, geo-social check-ins have the potential to reach out to hundreds or even thousands of individuals. Users who check-in often have the option of syncing their accounts with other social media such as Twitter or Face book Feeds, so the information is being spread very quickly across multiple social media applications. • Detailed demographic data – Users that check-in are tracked and analyzed by demographics such as age and gender. Foursquare specifically, even provides social reach statistics i.e., how many people have sent their check-in to Face book or Twitter feeds. ii)Social Networking Sites Advertising campaigns on Face book and MySpace have proved to be the most effective in terms of cost and reach. This is because these sites offer the ability to target advertisements to individual users’ pages (based on the information that they provided about their age, gender, and other characteristics). For example, age can be an extremely important variable when recruiting younger subjects for vaccine trials or older persons for trials on Alzheimer’s disease. Further, trial ads or announcements have the potential to be rapidly and widely disseminated through users’ friend networks. One of the most powerful and costeffective patient recruitment features of Face book and MySpace is “geo-targeting.” This feature allows advertisers to precisely target and direct trial messaging within a specific radius of a city or to a zip code or even IP addresses. Thus, by placing targeted ads on Face book, MySpace, and other social networking sites appears to work well to improve patient enrolment. Twitter, one of the increasingly popular social networking sites, is also being vetted as a possible patient recruitment tool. Many patient recruitment companies have Twitter accounts and a few clinical trial listing sites, including Clinical Connection Page | 2
(www.clinicalconnection.com) and Medpedia (medpedia.com), tweet about ongoing and active trials. Another company, TrialX (trialx.com), which attempts to match patients to specific clinical trials based on online patient-generated health records, also has an active Twitter presence. Patients can send a tweet to @TrialX describing the type of trial for which they are looking, and Trial X can then tweet back a link to a list of potential trials. iii) Software Applications Clinical trial listing websites like Clinical Connection and Medpedia offer services that help match prospective clinical trial participants to appropriate clinical trials. While these clinical trials matching sites are relatively new, they are growing in popularity as clinical trial recruitment tools. As for example Acurian launched a social networking application for Face book and MySpace called Click It Forward, which is intended to raise clinical trial awareness. The application can be installed on users’ Face book and MySpace pages, and online friends can then be invited to “click it forward” by installing it on their profile pages (for each friend who accepts, Acurian makes a contribution to a cause that was preselected by the original user). The program automatically becomes a part of a user’s profile page, which subsequently allows Acurian to send the latest clinical research or trial opportunities to individual click-itforwardcommunities. In recent times, there has been growing popularity and increasing reliance on use of smart phones. This has led to development of mobile clinical trial recruitment app. Med Trust Online, in collaboration with GlaxoSmithKline, developed the Cancer Trials App for the iPhone. The app is intended to provide quick mobile access to registered clinical trial information for oncologists and cancer patients. Some of the information offered by the app includes trial locations (within a 500-mile radius) for 12 common cancers; description of the trial by phase, gender, age, and study type; and a complete review of the trial with contact information and a visual map that pinpoints a user’s location to the nearest trials. Genentech (Roche) recently announced plans to expand its Bio Oncology research app to include oncology clinical trials. Also, Apple’s recent introduction of the iPad has prompted a variety of software developers to begin work on clinical trial recruitment apps for the device. This is because the device is rapidly gaining in popularity among healthcare professionals and patients alike. Many believe the iPad has the potential to revolutionize clinical research. How can patients use social media The place where patients visit these social media are known as e-patients, they empower themselves with knowledge obtained from web research, enabling them to play a more active role in their own healthcare decisions. E-patients who research their health conditions and join active online health communities create an accessible and driven source of potential clinical research participants. E-patients are selforganizing in web-based patient groups to share health information. The mobilization of e-patients on the web provides an ideal opportunity for highly targeted recruitment within specific patient populations as opposed to appealing to a mass audience. As a result, it has become crucial for patient recruitment strategies to incorporate internet-based strategies in recruitment plans, and now more specifically, social media. Challenges in using social media a) One of the major challenges facing the adoption of social media as a patient enrollment strategy is the lack of clearly defined regulations to guide its use. Legal and regulatory concerns have caused many corporate sponsors to limit the use of social media for any purpose, including clinical research. However, according to BBK Worldwide, believes that existing clinical guidelines for patient recruitment can easily be applied to social media. Also, the internal guidelines established for risk mitigation by sponsors are Page | 3
usually more restrictive and limiting than those established by external regulatory agencies. In addition, clinical trial personnel are very familiar with regulatory guidelines and understand the critical importance of maintaining and preserving regulatory compliance during the conduct of a trial. b) Another concern of many sponsors is the perceived inability to manage trial messaging and conversations about a trial on social networking sites. Many believe this lack of control may seriously compromise the integrity of some clinical protocols and jeopardize accurate reporting of trial results. Still others fear that “rogue” trial participants or followers may falsely report adverse events or call attention to safety concerns that may impede or hinder approval of experimental medicines. Finally, some sponsors
and advocacy groups contend the use of social media to enrol patients may compromise trial participants’ confidentiality and privacy rights. Despite these challenges, many patient recruitment companies and online patient communities are forging ahead and continue to experiment with social media as a clinical trial recruitment tool. According to Kevin Olson, CEO of ISR With sixty-two percent of world-wide population somehow engaged in social media, there’s no surprise that Pharma companies is now eager to take advantage of the pool of potential subjects for their clinical trials. However, Pharma companies are proceeding with caution as they wait for regulatory guidance and continue testing strategies for the new channel in a proportion of their studies.
Patient Recruitment: Regulatory & IRB Considerations of Social Media All forms of direct advertising require review. Direct advertising can take many forms and can be found on search engines, websites, Face book, blogs, etc. Ad formats subject to review include display ads, rich media ads, search ads, in-text ads, social network ads, social network pages, blogs, tweets, and text messages. Regardless of use of any communications medium or where it appears, any communication intended for consumption by prospective patients will require review. As the social network ads might be invasive and social network will track user interests with “cookies” and use those interests to serve users relevant ads on their page, so reviewing them before placing is important. Regarding social network pages too, IRB can have concerns. For example, a study-specific Face book page can be used for patient recruitment purposes. If you are using such a page to collect patient information, the IRB will have some additional considerations: • • •
Access or privacy settings of the page Is any protected health information (PHI) being recorded? Is a partial HIPAA waiver required? Are you using a pre-screening form? Confidentiality of the collected information?
Additional examples of items requiring review include: • Blogs for a specific study containing direct advertising • Posts on any blog containing direct advertising • Tweets containing direct advertising • Text messages containing direct advertising Does Not Require Review The following items generally do not require review: • Information about relevant research conducted outside the study, including information on websites, blogs, Face book, and Twitter
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General tips and/or resources containing information that is generally accessible on the Internet. This includes copied information from or links to blogs, news articles or sources, websites, or other social media pages. Signs and symptoms of the underlying disease or condition Information, pictures, videos, links or other information posted by a research participant Websites that contain only the following information: study title, purpose of study, protocol summary, basic eligibility criteria, study site location(s), and how to contact the study site for more information (e.g. clinicaltrials.gov). Participants can freely share information about clinical trials as they please. For example, a research participant who has a Face book page is free to post information about a clinical trial. That Facebook page does not require review. OHRP’s Guidance on Institutional Review Board Review of Clinical Trial Websites exempts particular kinds of clinical trials websites from review. Websites not requiring review must be limited to information about study title, purpose of the study, protocol summary, basic eligibility criteria, study site location(s), and how to contact the study site for more information. An example of a website not requiring review is clinicaltrials.gov.
One of major concerns about the use of social media for patient recruitment relates to the difficulty of conversing in a manner social media users expect given the constraints of our industry. Social media users are accustomed to interactive dialogue, which is difficult for research professionals to participate in if every social media post must be approved. Therefore, Clinical research professionals should work closely with the IRB before recruitment begins and provide parameters for what might be discussed via social media. If you work closely with the IRB up front, the IRB may be able to provide expedited review for social media posts during the course of enrollment. Alternatively, if your social media post is within the parameters that you and the IRB have agreed upon and the essence of that post is the same, you may not require additional review. If other IRBs adopt similar policies, this flexibility would certainly make social media a more attractive recruitment option. The key is that research professionals communicate with IRBs early to determine their policies and map an appropriate recruitment plan. Social Media Feasibility Planning The difficulty, of course, is in selecting the most suitable situations for social media use in patient recruitment. Many clinical researchers are confused and overwhelmed by social media’s potential and challenges. To create clarity, clinical researchers need a systematic framework to hone in on key variables and assess social media’s viability for their project. In such situations, a social media feasibility model can provide the necessary systematic framework. It should incorporate marketing fundamentals such as demographics, as well as considerations specific to social media and patient recruitment. In cases where social media is determined to be a viable patient recruitment option, this feasibility framework can serve as a foundation for social media strategy, thus positioning the project for success. Use of such a model requires collection of a variety of quantitative and qualitative data, as well as reflection on the particulars of the project. In some cases, information about specific areas will be lacking. Even so, it’s better to identify those areas as unknown variables, rather than be completely unaware of their potential impact How to use Social Media in Feasibility Planning:• To begin the patient assessment, start by understanding who the target patients are. Determine which demographics are most strongly associated with the patient population, considering variables such as gender, age, race, socioeconomic status and geography. Remember that in some cases, the primary audience may be a caregiver. Demographic variables often influence patient health information seeking behavior, particularly with regard to social media. For example, women and younger audiences tend to be particularly enthusiastic users of social media when Page | 5
seeking health information In addition, it is important to assess the target patient population’s geographic location. A social media presence will need to reach people in the geographic areas from which participants are needed. In the case of a remote or virtual because they determine where and how people interact with information, both online and offline. Assess the health status of the patient population and consider how people with that status are likely to interact with health information. In particular, make note of whether the target population is healthy or has a chronic, acute or rare disease. Also consider relevant comorbid conditions. All of these variables impact online health-seeking behavior. Rare disease patients, for example, are particularly motivated and engaged online health information consumers. •
Second, research where the target patient population congregates. Location is key; determine if patients gather on mainstream social sites, patient forums and communities, advocacy groups, blogs or other areas. Also consider the online concentration and organization of the patient population. When patients have self-organized into concentrated online pockets, fewer patient recruitment resources are required to reach them. Furthermore, the viral nature of social media is easier to make use of when the target audience is organized and concentrated.
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Third, research how the patient population prefers to be engaged. Consider their preferred type of content, tone of content, timing and frequency of interaction. These engagement preferences determine the ideal delivery of your patient recruitment message.
Now that a patient profile has been developed, including who the patients are, where they congregate, and how they engage, consider these questions: Are these patients using social media? Will they be receptive to receiving patient recruitment information via social media? Is social media a good avenue to reach these patients? Are there better avenues? Do these patients engage in social media? Am I willing to engage them in the way they prefer? By pondering these questions in relation to the information gathered, a decision can be made as to whether social media is a good avenue to reach the desired patient population.
Solutions in using social media for recruitment purpose a)Assessment of Abilities: Now it’s time to assess your own abilities Firstly, do an inventory of social media assets that are potentially accessible. Note assets within your organization and that of your research partners. Also note social media assets that may be accessible in other organizations, including those on mainstream social sites, advocacy sites, patient forums and communities, and blogs. If internal social media assets are found to be lacking, consider whether new assets should be strategically developed for use with future projects. Making such a decision is beyond the scope of this discussion, but it is something to consider study, geography is less of a consideration because fewer geographic limitations exist. b)Assessment of Preferences: With a clear assessment of both patients and abilities in place, begin the third and final framework stage .Contemplate your preferences, with particular attention to two big factors. Initially, consider your preferred budget, both in terms of patient recruitment as a whole and that of social media specifically. Then move on to thinking about your desire to innovate and your tolerance for risk. These preferences will be used as a lens to further, analyze the other two stages of the framework, allowing a final determination to be made. A larger budget, desire to innovate and tolerance Page | 6
for risk indicate the need for a more optimistic view during final analysis of the insights gathered. On the other hand, a lower budget, a lack of desire to innovate and low tolerance for risk indicate the need for a more critical view while analyzing insights.
c) Creating Content It’s easy to get wrapped up in the technology when talking about social media, but flashy tools alone won’t make a campaign effective—good content does. Social media content should be • Relevant, useful, and interesting • Easy to understand and share • Friendly, conversational, and engaging • Action-oriented d) Social media is most effective when the content relates to a particular interest or desire of a specific group of people. Because your target audience can receive multiple messages from multiple sources every day, try to make your messages relevant, useful, and interesting so your audience will interact and be engaged. Relevancy: Relevant social media content makes people think Relevant information can be based on Time, Geography, Audience, Interests Creating Usefulness: When people can use social media information to see their lives in new ways, change behavior, or learn something they didn’t know before, it’s useful. Make information useful by suggesting practical steps or citing convincing statistics or report findings. Make it Interesting: To capture a reader’s attention, create content that piques curiosity. Interesting social media content is more likely to be shared. Of course, content should always be professional and relevant to a health topic.
Conclusion Social media seems like a relatively cost effective method in creating increased trial interest. Through social networking, online communities, and other engagement platforms, the internet has attracted a universe of e-patients who bring greater sophistication, knowledge and accountability for their own health and healthcare. Social media has helped to create more informed patients. This, in turn, has lead to more detailed and involved discussions between patient and physician. Social media has also allowed for greater communication and sharing of experiences between patients. PatientsLikeMe.com and Inspire.com are two online resources that allow for the effective sharing of experiences – and through this exchange, patients are, in essence, helping other patients. Although there are several forms of digital media recruiters can tap in the search for clinical trial participants, none have captivated and cautioned companies more than social media. With the numbers of people seeking health information online increasing at a rapid clip, sponsors and CROs are using additional avenues of outreach to widen the recruitment funnel, with some exploring the use of popular social networking channels such as Face book, Twitter, MySpace, and YouTube, among others. These communication platforms provide alternative and more open avenues to reach and in some cases interact with potential patients, to support and inform patients, identify patient influences, and make study information easily accessible. In recent years, patient recruitment companies in particular have had success creating social network advertisements, where companies buy demographic placement that match the requirements of the clinical studies they are looking to enroll. Some recruitment organizations, such as Acurian, also provide their own proprietary social media interface designed to raise clinical trial awareness, boost patient access to relevant trials, and expand sponsors’ access to interested patients. The multiple sclerosis community, for example, is widely known Page | 7
for its active social networks, which use online communities to share information on a wide range of topics, from comparing side effects to lifestyle tips. Popular nonprofit groups such as PatientsLikeMe (patientslikeme.com), a health-data sharing company, provide a social media forum where patients can share and learn real-world, outcomes based health data. Resulting discoveries can be significant for clinical research. It’s important to determine which groups, forums, and networks matter most to your study’s target population. References 1.
Practical Guidance: The Use of Social Media In Oncology Practice : Dizon DS, Graham D, Thompson MA, Johnson LJ, Johnston C, Fisch MJ, Miller R. http://www.ncbi.nlm.nih.gov/pubmed/23277774 2. (CDC’s Guide to Writing for Social Media) http://www.cdc.gov/SocialMedia/Tools/guidelines/) 3. Social Media in Clinical Trial recruitment www.centerwatch.com/news-online/article/2158/mayo-clinicsees-potential-of-social-mediainpatient-recruitment 4. Social Media Secrets for your Business (http://www.socialmediasecretsforyourbusiness.com/ 5. Leveraging Social media for Clinical Trial Recruitment; bbkworldwide.com/social 6. Social Media’s Impact On Clinical Trial Enrollment Written by Cliff Mintz http://lifescienceleader.com/magazine/past-issues3/item/3584-social-media%E2%80%99s-impact-onclinical-trial-enrollment?list=n) 7. ISR’s Report Offers Social Media Best Practices for Clinical Trial Patient Recruitment http://www.businesswire.com/news/home/20130108006623/en/ISR%E2%80%99s-Report-Offers-SocialMedia-Practices-ClinicalIndustry Standard Research Kevin Olson) 8. Study recruitment :Social media Feasibility model : Rahlyn Gossen from Rebar Interactive www.samedanltd.com) 9. http://patientrecruitment.co.uk/ 10. Patient Recruitment: Sites key to patient search http://www.iconplc.com/icon-files/docs/thoughtleadership/public/Patient-Recruitment_-RD-Directions_-May.pdf by Michael D. Christel 11. Patient Engagement - Bring it Online Posted by Aaron Fleishman on Mon, Aug 20, 2012 http://innovations.bbkworldwide.com/bid/154389/Patient-Engagement-Bring-it-Online
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