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TrialMatch
- 1. Evaluating Outreach through TrialMatch – An Alzheimer’s Association Clinical Research Matching Program in the MA/NH Area • Emilie Sullivan Medical & Scientific Programs Intern, MA/NH Chapter, Alzheimer’s Association; • Lenore Jackson-Pope BSN, MSM, CCRP, Manager, Medical and Research Education, MA/NH Chapter, Alzheimer’s Association; • Sarah Wiederhold, Operations Coordinator, Programs and Services, MA/NH Chapter, Alzheimer’s Association
- 2. Overview • Background • Purpose • Methods • Results • Discussion • Conclusion
- 3. Background • The Alzheimer’s Association is the leading global voluntary health organization in Alzheimer’s care and support, and the largest nonprofit funder of Alzheimer’s research. • Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. • TrialMatch is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies in their local area.
- 4. Purpose • To evaluate TrialMatch connections in volunteer participants in the MA/NH region • To use participant feedback to understand where follow-up may be needed. • To accelerate and grow research participation locally. • To determine whether or not the Alzheimer’s Association is having an impact on clinical study recruitment locally and how our Chapter may improve on this for the future.
- 5. Methods • TrialMatch profiles are completed in person or online. • When an individual fills out a TrialMatch card information is captured at the MA/NH Chapter and sent to the National chapter. Individuals receive a follow up call or e-mail detailing how to access and use the TrialMatch website. • Online, an individual completes a profile and is immediately connected to the TrialMatch website. • TrialMatch participants are connected to clinical studies in their area based on their zip code.
- 6. Methods • The MA/NH Chapter wanted to evaluate their follow up approach to determine how to further improve their local TrialMatch recruitment efforts. • In 2014, a follow-up survey was sent out to a population of TrialMatch users in order to improve on these efforts. • Information was noted, but no follow-up occurred • The continued follow up effort was again implemented in 2015 through another follow-up survey. • The data collected from both surveys provided the MA/NH chapter with information to follow up with TrialMatch participants.
- 7. Methods Total =1024 No Response (842) Responses (64) Bounce/Opt-Out (118) Survey I
- 8. Methods Survey I • Design: 14 questions; 9 multiple choice, 5 open- ended • Average time taken to complete: 3:25
- 9. Methods Survey IITotal = 704 No Response (545) Responses (44) Bounce/Opt-Out (115)
- 10. Methods Survey II • Design: 16 questions; 14 multiple choice, 2 open- ended • Average time taken to complete: 10 minutes • Outliers: 4 people took over a week to complete the survey, 5 people took over a day to complete the survey
- 11. • There were a few differences between the surveys: • The length • The time taken to complete • The difference in questions: some questions (such as - Which type of study did you enroll in & What could be improved) went from an open-ended format to a multiple choice format. Please see copy of both surveys.
- 12. Results Survey I Q1. Did you receive a follow-up call or e-mail after completing a TrialMatch card?
- 13. Results Survey II Q1. Did you receive a follow-up call or e-mail after completing a TrialMatch card?
- 14. Results Survey I Q2. Did the call or e-mail help in directing you to fill out your TrialMatch profile?
- 15. Results Survey II Q2. Did the call or e-mail help in directing you to fill out your TrialMatch profile?
- 16. Results Survey I Q3. Did you receive information about a specific trial?
- 17. Results Survey II Q3. Did you receive information about a specific trial?
- 18. Results Survey I Q4. Did you enroll in a study?
- 19. Results Survey II Q4. Did you enroll in a study?
- 20. Results Survey I Q5. On a scale of 1 (completely dissatisfied) to 5 (completely satisfied), how would you rate your overall experience with TrialMatch?
- 21. Results Survey II Q5. On a scale of 1 (completely dissatisfied) to 5 (completely satisfied), how would you rate your overall experience with TrialMatch?
- 22. Results Survey I Q6. Did you learn anything about research?
- 23. ResultsSurvey II Q6. Did you learn anything about Alzheimer's disease, related dementia, or types of clinical trials after visiting TrialMatch?
- 24. Results Survey I Q7. Which of the following best describes you?
- 25. Results Survey II Q7. Which of the following best describes you?
- 26. Results Survey II Q8. Which type of study did you enroll in?
- 27. Results Survey II Q9. Why didn't you enroll in a study?
- 28. Results Survey II Q10. What can be improved on TrialMatch?
- 29. Results Survey II Q11. How do you suggest we get more people involved in clinical trial studies?
- 30. Results Survey II Q12. To which racial or ethnic group do you most identify with?
- 31. Practices for Promotion Practices for Promotion already in place Nationally and adopted at the MA/NH Chapter: • Place link to TrialMatch on your Chapter’s website. • Promote TrialMatch to a variety of audiences. • Emphasize that there a variety of studies in which individuals may choose to participate including those that do not involve taking a drug – TrialMatch has studies for everyone • Physicians have choices in terms of how they utilize the service – they can see all the trial on TrialMatch or they can match a patient to a trial by creating a profile • Educate the Medical & Scientific Advisory Council on TrialMatch • Take culturally relevant material to present to a particular audience. • Inform individuals the service is free and confidential.
- 32. Practices for Promotion already in place Nationally and adopted at the MA/NH Chapter: • At the Clinical Studies/TrialMatch booth at the Walk to End Alzheimer’s ensure you have an individual working the booth who is educated on TrialMatch. • Promote TrialMatch from the main stage at the Walk to End Alzheimer’s – Have screen captures of TrialMatch playing on a loop at the Walk as well. • Host a booth at local physician events and distribute packets on clinical studies and TrialMatch • Distribute information about clinical studies and TrialMatch to support groups via programs, mailings, and at appointments. • Provide information to local physician practices on TrialMatch. • Revise Early Stage support group materials to include TrialMatch.
- 33. Practices for Promotion: exceeds/// expectations • Promote TrialMatch at all community programs, health fairs, conferences, etc., throughout your Chapter area – EXAMPLES • Host an audio/video conference for the public that cover the following topics: clinical trials and TrialMatch – EXAMPLES • Work with local research centers to co-sponsor education events focused on the importance of participation in clinical studies, and to promote TrialMatch – EXAMPLES
- 34. • Identify volunteers, chapter staff, community members, and professionals interested TrialMatch and how it works. • Educate chapter staff on TrialMatch and how it works – I have heard too often at events ‘I don’t know enough about it, let me refer you to the TrialMatch manager’ • Utilize various types of media to promote clinical study participation and TrialMatch • It might be beneficial to have a message board so users can get online and discuss their experience in using TrialMatch. • Inform various minority communities of how beneficial the Alzheimer’s Association can be to their lives • We have a growing older population. We also have a growing minority population. We need to take into consideration the public health aspect of this, as more minority populations are affected by chronic diseases than other populations. Best Practices for Promotion: Areas of Improvement
- 35. • Educational seminars to promote Best Practices or Good Clinical Practices for the recruitment/retention of research volunteers among doctors, trial coordinators, etc. • Research Roundtable for Professionals – experiences with research recruitment, promotion on TrialMatch (can include lab managers/coordinators too). • TrialMatch Roundtable – promote TrialMatch by discussion past/current research experiences. • TrialMatch video – ‘how-to guide’ Potential Practices for Future Promotion
- 36. Conclusion • TrialMatch is an effective tool in connecting potential volunteers with clinical studies. • Bringing awareness about this program to the general public is pertinent in the clinical trial connection process. • While it is clear that TrialMatch is a clinical studies matching service, guidance on using this service and following up with potential volunteers are two main focal points for continued success.
- 37. References • Alzheimer’s Association. (2015) Research Center: Clinical Trials – TrialMatch. Alzheimer’s Association. www.alz.org/alzheimers_disease_1973.asp • Center for Information and Study on Clinical Research Participation (2009). Report on clinical trial information seekers. http://www.ciscrp.org/programs-events/research-and- studies/perceptions-and-insights
Notes de l'éditeur
- An estimated 5.4 million Americans have Alzheimer’s disease with someone being diagnosed every 69 seconds. As our population ages, the prevalence of Alzheimer’s disease is projected to increase by more than 50% by 2030. The Alzheimer’s Association was founded to enhance the care and support, and to advocate for people affected by Alzheimer’s and other related dementias. Clinical trials have been a vital part of medical research for decades. There is a large population of people who do not participate in clinical trials for various reasons, but the underlying message from clinical researchers is a call for more participation from volunteers every year. The creation of TrialMatch is essential to the Alzheimer’s Association strategic goal to accelerate research. One priority of the Alzheimer’s Association is to grow nationwide clinical studies recruitment efforts that accelerate study enrollment and transform recruitment for Alzheimer’s disease across the country. Even with this innovative matching service, there are still flaws (still a disconnect?) in connecting volunteers with clinical studies. Many people sign-up for TrialMatch but thousands do not sign up for clinical trials.
- Survey I E-mailed to 906 TrialMatch participants 842 did not respond 64 participants responded, with 55 responses being totally complete 108 e-mails bounced, 8 participants opted-out
- Refer to hand-out: Survey I copy
- E-mailed to 589 TrialMatch participants 545 did not respond 44 participants responded, with 32 responses being totally complete 94 e-mails bounced, 21 participants opted-out
- Refer to hand-out: Survey II copy
- The difference in questions: some questions (such as - Which type of study did you enroll in & What could be improved) - went from open-ended format to multiple choice format. ^^ Explain this and how I got to this conclusion of how to categorize this – all based on data from first survey.
- There could be a couple reasons for 30% of people who responded no: E-mails being directed to spam/junk folder Participant preference of phone call vs. e-mail (vice versa) Contact not followed up with as of yet
- Other Responses included: (3) Phone call/e-mail follow up took place, participants did not follow up with initial contact (2) Help was not needed in completing the profile (1) Could not find link (1) Could not remember conversation/follow-up was over a year ago (1) Preferred different follow-up contact methods
- Comments: (8) Family History (3) Caretaker
- Other: (1) None (2) Nothing available in the area (3) No follow-up contact, interested in enrolling
- Other (3) Not contacted (3) Just signed-up (3) Confusion with trial listing (3) Did not qualify for studies they were matched to (7) None suggested
- Other: (1) Linked/directed to many studies not qualified for (2) Not contacted (2) No time at the moment
- Other: (1) More detailed announcements at Alzheimer’s Association seminars
- Other: European descent I would also like to bring particular attention to this data.
- *Refer to Best Practices for Promotion sheet* There are 24 Practices for Promotion. Of these bullet points the MA/NH Chapter already has 21 of these practices completely implemented, with 3 going above and beyond suggested promotion, and 3 practices that are implemented but show room for improvement. We have a link to TrialMatch on our Chapter’s homepage Promoting TrialMatch to a variety of audiences, like at colleges, to physician groups, to caretakers, so many other ways we participate in educational outreach. Educating physicians and medical professionals so they can better serve their patients Educate MSC – as I stated previously, making sure they know the updates, using the physician APP, etc. Collaborating major medical facilities to host events or be at their events to promote TrialMatch We all participate in so many events and a majority of our work overlaps with other departments work – remembering that we work in a collaborative atmosphere is imperative to our mission. Ex: having a walk table – referring to other programs like TrialMatch and vice versa.
- Examples???--
- Here are some areas of improvement that we could consider developing more This problem can be solved by taking the time to train employees even better than they already are so they feel confident when talking about TrialMatch. This not only goes for TrialMatch, but for all programs in general. Having a more comprehensive summary available for these programs we put forth is vital to our future as an Association. We do this often by using Helpline volunteers, or volunteers who have come to the Association for help in the form of a program/service, but what about getting a TrialMatch volunteer involved? This would be beneficial at various programs, it is important to have someone who can talk about the actual experience to another person contemplating signing up for TrialMatch. It would also provide us with feedback on how to improve TrialMatch even more (if need be), consider adding in TrialMatch even more. Or just the latest research on Alzheimer’s disease. Just really involving minority communities. Continuing to develop and implement programs directed towards minority populations will only be beneficial for now and for the future.
- Educational seminars or professional discussions are important because ideas come together and allow people to collaborate on efforts. Having current or past clinical research study participants come together once a year to talk about their experiences in clinical studies. This would be beneficial to physicians conducting these trials, plus it has the potential to help the Association see where room for improvement might need to happen. - Video explaining how to use TrialMatch – having different demographics create a TrialMatch profile (healthy volunteer, MCI, caregiver, physician, minority population). This could show how easy-to-use this site is and get rid of any misconceptions people might have about signing up for TrialMatch.