Social Media in Patient Recruitment and Retention: Benchmarking Strategies. Mary Jo Lamberti, Tufts CSDD Senior Research Fellow September 5, 2014

Size: px

Start display at page:

Download "Social Media in Patient Recruitment and Retention: Benchmarking Strategies. Mary Jo Lamberti, Tufts CSDD Senior Research Fellow September 5, 2014"

Paul Manning
7 years ago
Views:

1 Social Media in Patient Recruitment and Retention: Benchmarking Strategies Mary Jo Lamberti, Tufts CSDD Senior Research Fellow September 5, 2014

2 About Tufts CSDD Center at Tufts University School of Medicine ( Tufts CSDD: Furthering the Cause of Pharmaceutical Innovation Independent, academic group focusing on drug development scientific, regulatory, economic and management policy Staff Presentations Surveys & Questionnaires Louis Lasagna Library of Drug Development Information Services Electronic Databases & Bibliographies Sponsorship Multi-Company Project Series Grant funded and sponsored studies Results have informed Congress, the National Academies of Science, Foundations, Industry, Capital Market analysts and investors, Regulatory Agencies, the National Institutes of Health Manuscripts, White Papers & Book Chapters Commentaries & Editorials Public Hearings & Testimony Bi-Monthly Impact Report Research and Publications Tufts Center for the Study of Drug Development T U F T S U N I V E R S I T Y Industry Programs Sponsored Research Projects Tufts CSDD Executive Forum Quarterly Updates Annual Postgraduate Course Annual Outlook Report Subscription- Based Reports Training & Workshops Annual Leadership Course Quarterly R&D Mgmt. Report Webinars, Wkshps., & R&D Roundtables 2 2

3 Tufts CSDD Working Group Model Collaborative forum Participant-driven objectives, activities and output Driven by primary and secondary data (gathered by TCSDD team) and by shared insights and experiences 3 3

4 Defining Social Media in Clinical Research Online communities through which users share ideas, data, images, opinions and personal messages related to clinical research information and experiences Most well-known social media communities: Facebook, YouTube, Twitter, Pinterest Crowdsourcing: a set of digital platforms that allow social sharing of ideas, data, images, videos, opinions and personal messages. 4 4

5 Rationale for Tufts CSDD Study Social Media Communities are a part of the Clinical Research Enterprise Numerous Challenges posed by Social Media Communities in Clinical Research No Standard Policies or Practices have been Established Limited FDA guidance on use of social media in clinical research FDA draft guidance released in January 2014 focus on postmarketing submissions FDA draft guidance released in June 2014 Two documents concerning company behavior on social media platforms like Twitter and when correcting misinformation on third-party sites 5 5

6 Objectives and Aims: Tufts CSDD Social Media Patient Recruitment and Retention Subcommittee To examine the use of social media for patient recruitment and retention across the industry through a landscape assessment/survey. To gain insight into best practices of biopharma, CROs, and providers through presentations and discussions of their approaches to social media for patient recruitment and retention purposes 6

7 Company Use of Social Media for Patient Recruitment and Retention in 2012 Among working group companies, social media (including ad placement) is on average being used in ~11% of trials Company Trials with Social Percentage using Total Trials in 2012 media social media % % % % % % % % % % % % % % 7

8 How Social Media is Being Used While 14/15 companies have posted ads on social media websites, only 3/13 biopharmaceutical companies and 2/2 CROs have used it to interactively engage patients. 8

9 Platforms Used for Recruitment (N=14) Facebook Patient Community YouTube Twitter Mobile Apps Blog 9

10 Current Social Media Use by Global Region for Recruitment (N=14) North America Asia/Pacific Western Europe Eastern Europe Latin America Rest of World 10

11 Companies Plan to Increase Social Media Usage 11/15 plan to expand use of particular platforms All Patientslikeme, Facebook, Google Twitter, patient communities, mobile apps Site and patient mobile phone applications Mobile apps Facebook and patient communities Probably mapps in general, as well as expanding our presence on Facebook, Twitter, etc. Hopefully all the major ones: FB, Twitter, Pinterest Expand Facebook and Patient community use/presence. Perhaps initiate usage of LinkedIn, Twitter and mobile apps. Pinterest 11

12 Top Challenges in Using Social Media (N=13) Concerns about AE reporting 8 Internal challenges Concerns about country specific regulations 6 6 Not targeting appropriate patient population Concerns about site personnel/patient unblinding Concerns about patient privacy Not using appropriate forums or online communities 3 Concerns about personal data protection Other

13 Key Legal and Regulatory Challenges Lack of clear guidance from FDA makes internal reviews/approvals more difficult Concerns over AE reporting and safety issues/pharmacovigilance Concerns about unblinding patients to their treatments or sites/sponsors to patients treatments Concerns over intellectual property Not being able to effectively monitor/moderate when a site is set-up for 2-way communication Lack of organizational experience or alignment Off-label marketing 13

14 Recommendations for Using Social Media for Patient Recruitment Develop a plan or strategy before using social media Establish a digital strategy within your organization Determine internal strategies and strategies for partners/third parties Implement a process to work with partners and third parties Determine whether social media is appropriate for a study is there an audience? Use of social listening Evaluate which channels will be used Leverage tools and platforms Create a plan and draft a proposal 14

15 Recommendations (continued) Establish governance structure with all functions involved (legal, regulatory, etc.) and clearly defined approval process Gather necessary approvals within specific timeframe Designate roles/responsibilities within the organization for use of social media for patient recruitment/retention Is staffing adequate; does organization need to fill specific roles, e.g., digital strategist or other positions 15

16 Recommendations (continued) Global considerations: Develop a country by country plan Manage your social media campaign Establish a content creation and approval process Includes IRB /Ethics Committee Education and Review Plan for questions Monitor the website/channels Ensure that content is updated Identify metrics that will be used to measure success Compare cost of randomized patient to other interventions Other metrics? What are the learnings/insights from the campaign? 16

17 Patient Data 17

18 Patient Survey High Level Findings 24 of 27 patients believe that sponsors should consult with them about the informed consent form; 22 of 27 believe that sponsors should consult with them about specific procedures in the trial and eligibility criteria Patients use social media mainly to gather feedback on specific questions they have on their indication (N = 20 mentions). Sharing experiences and interacting with someone with the same indication were second and third (N = 14 and 13 mentions respectively) Majority of patients trust patient advocacy group websites the most (N = 16 of 21) 19 of 25 patients use social media to learn about clinical trial opportunities; 18 of 25 to gather information on their specific indication 18 18

19 Are You Participating in a Clinical Trial? If yes, How is your Experience with Clinical Trials? Yes No Very Positive Somewhat Positive Somewhat Negative Very Negative PARTICIPATING IN A CT CT EXPERIENCE 19 I believe my participation alone will further the research in dealing with my illness. --- Patient 19

Patient Use of Social Media Yes No 7 10 6 12 17 18 15 19 13

SUPPORT GROUP FOR PATIENTS WITH YOUR MEDICA L CONDITION

CONNECT WITH OTHER INDIVIDUALS WITH THE SAME CONDITION CHECK

20 Patient Use of Social Media Yes No GATHER INFORMATION A BOUT YOUR MEDICA L CONDITION JOIN A SUPPORT GROUP FOR PATIENTS WITH YOUR MEDICA L CONDITION GATHER INFORMATION A BOUT CLINICA L TRIAL OPPORTUNITIES CONNECT WITH OTHER INDIVIDUALS WITH THE SAME CONDITION CHECK F OR OTHER PATIENTS WITHIN THE S A ME TRIAL 20 Total N = 25 patients 20

Most Trusted Websites Public Social Media Websites (e.g.

g. Crohnology, Melanoma Foundation, Michael J.

PatientsLikeMe, Inspire) Other websites mentioned: 14% 10%

21 Most Trusted Websites Public Social Media Websites (e.g. Facebook, Twitter, Wikipedia) Patient Advocacy Websites (e.g. Crohnology, Melanoma Foundation, Michael J. Fox Foundation) Patient Social Communitieis (e.g. PatientsLikeMe, Inspire) Other websites mentioned: 14% 10% Craigslist Google Sites (e.g. Mayo Clinic; Cleveland Clinic) 76% 21 N = 21 patients 21

Benefits to Using Social Media for Clinical Research

uninsured or w/o diagnosis Being able to influence

(or a community) with my medical condition at any time

Getting feedback on specific questions of importance to

22 Benefits to Using Social Media for Clinical Research Other benefits mentioned: Medical treatment for uninsured or w/o diagnosis Being able to influence therapies that come to market Interacting with someone (or a community) with my medical condition at any time of day Sharing my experiences and ideas with others Getting feedback on specific questions of importance to me Inspiring collective action (e.g. participating in a walk for people with my condition) 36% 16% 23% 25% 22 N = 26 of 27 patients answered (patients were able to select more than one option) 22

23 Patient Interest in Helping Design Clinical Trial Protocols 24 of 24 Patients interested in helping design clinical trial protocols Verbatim Responses: Patients need to be proactive in their diagnosis and treatment. Patients who have skin in the game are more likely to be compliant. Like to be consulted and help bring new drugs to my physicians 23 23

24 Patient Comfort Levels with Social Media with Respect to Very Comfortable Somewhat Comfortable Somewhat Uncomfortable Very Uncomfortable Gather general information about the clinical trial process Identify a clinical trial that may be right for you, family or a friend Communicate with a clinical research professional Provide input into the design of a study protocol Interact with other study volunteers Receive and discuss the results of the clinical trial Connect with people of the same condition

25 Thank you! Mary Jo Lamberti, PhD Tufts CSDD 25

ACT Enrollment Planners Conference

CONVERGE CONSULTING 7.13.16 ACT Enrollment Planners Conference PRESENTERS: Ann Oleson, CEO Jay Kelly, President 2 ABOUT CONVERGE 3 4 AGENDA 2015 Inbound Marketing in Higher Education Survey Methodology