{"id":69893,"date":"2022-04-26T14:24:00","date_gmt":"2022-04-26T14:24:00","guid":{"rendered":"https:\/\/www.imperialcrs.com\/blog\/?p=69893"},"modified":"2023-12-06T12:48:26","modified_gmt":"2023-12-06T12:48:26","slug":"clinical-trial-participants-sound-off","status":"publish","type":"post","link":"https:\/\/www.imperialcrs.com\/blog\/patient-engagement\/clinical-trial-participants-sound-off\/","title":{"rendered":"Clinical Trial Participants Sound Off"},"content":{"rendered":"<p>My colleagues and I attend several international conferences every year. We are particularly interested in discussions surrounding clinical trial participants and patient engagement, as this is an area where Imperial is involved with support for our sponsor and CRO clients.<\/p>\n<p>It\u2019s reassuring to see and hear more emphasis on meeting the patients\u2019 needs, engaging with patients, and supporting them in their clinical trial experience. That being said, as both a patient and a patient advocate, I hear from hundreds of patients on a daily basis, and their comments suggest there are many trials that aren\u2019t making the patient experience a priority.<\/p>\n<p>What is the reality of the patients\u2019 personal experience?<\/p>\n<p>I recently spoke with four oncology trial participants who had participated in different clinical trials worldwide:<\/p>\n<ul>\n<li>Koen (Grave, Netherlands)<\/li>\n<li>Lucy (London, England)<\/li>\n<li>Marilyn (Swansea, Wales)<\/li>\n<li>Michele (Grand Rapids, Michigan)<\/li>\n<\/ul>\n<p>It was a lively and illuminating discussion. This virtual focus group shed light on the patient experience, and two key points came through strongly:<\/p>\n<ol>\n<li>Patient engagement tools are essential to motivate participants and make them feel valued<\/li>\n<li>Participation requires a strong personal dedication to the trial<\/li>\n<\/ol>\n<p>Almost without exception, they spoke positively about being able to take part in <a href=\"https:\/\/www.researchmatch.org\/\">clinical trials<\/a>, about the teams looking after them, and about the hope that taking part in trials gave them.<\/p>\n<p>They also shared their challenges. The patients\u2019 accounts reinforced my position that effective patient engagement is a requirement for every trial, and the trials industry must actively commit to robust patient engagement programs.<\/p>\n<h2><strong>Joining the trial<\/strong><\/h2>\n<p>The four found out about <a href=\"https:\/\/www.centerwatch.com\/clinical-trials\/listings\/\">trials<\/a> through a variety of sources: surgeons, hospital staff, and social media.<\/p>\n<p>Lucy saw the trial as potentially superior to conventional treatment. \u201cIt\u2019s really tricky because, particularly for Stage 4 cancer patients, when you\u2019re entering a trial, the main thing is, does this have the potential to keep me alive longer, and that is the number one thing,\u201d she said.<\/p>\n<p>An aspect of the trial that appealed to Koen was the regular monitoring of his health. \u201cIt was not a mandatory option because I could also choose to do nothing and wait and see,\u201d he said. \u201cThe ways they follow up on you are way better when you\u2019re participating in the trial than if you don\u2019t. That is something that is maybe not emphasized a lot.\u201d<\/p>\n<h2><strong>Communication<\/strong><\/h2>\n<p>I asked our clinical trial participants if they received any printed or digital information about the trial after they joined. I received a variety of answers.<\/p>\n<p>Koen received printed information about the trial and about Dutch legislation, insurance, and trial participation risks.<\/p>\n<p>Michele told me, \u201cThey did send me a PDF file, and I remember it being very medically dense. I really didn\u2019t understand it.\u201d She looked for information online and found a research website that featured study information for researchers. \u201cThat\u2019s where I saw the information, and that was all I saw online about it.\u201d<\/p>\n<p>Lucy described the contrast between joining a trial and later changing to an approved treatment:<\/p>\n<blockquote><p><em>I was given verbal information, but I don\u2019t remember being given any written information. I was quite shocked when I went to a different treatment, when I moved onto an approved treatment, I was given a glossy magazine about it, and I remember at the time going, wow, this is exciting, because I definitely didn\u2019t get it with the first trial.&#8221;<\/em><\/p><\/blockquote>\n<h3><strong>Solution: <\/strong><\/h3>\n<p>All four patients I spoke with, and indeed almost every clinical trial participant I speak with online, expresses interest and curiosity about trial participation.<\/p>\n<p>The industry issues with recruiting for trials are less about patients not wanting to take part but more about the need for <a href=\"https:\/\/www.imperialcrs.com\/blog\/category\/imperial-graphics\/\">better communication<\/a>. Finding clear and effective ways to tell patients about clinical trials, and using well-presented, suitable methods to explain the key information about the trial itself, will help the patient more easily make decisions about participation.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-69894\" src=\"https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Cut-Clinical-Trial-Patient-Expenses.jpeg\" alt=\"Cut Trial Patient Expenses\" width=\"800\" height=\"529\" srcset=\"https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Cut-Clinical-Trial-Patient-Expenses.jpeg 800w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Cut-Clinical-Trial-Patient-Expenses-300x198.jpeg 300w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Cut-Clinical-Trial-Patient-Expenses-768x508.jpeg 768w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Cut-Clinical-Trial-Patient-Expenses-780x516.jpeg 780w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Cut-Clinical-Trial-Patient-Expenses-585x387.jpeg 585w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Cut-Clinical-Trial-Patient-Expenses-263x175.jpeg 263w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/p>\n<h2><strong>The study participant&#8217;s financial burden<\/strong><\/h2>\n<p>Trials can be expensive with many hidden costs. How did sites handle reimbursements?<\/p>\n<p>Koen was reimbursed for travel expenses but noted he had to keep detailed records and submit reimbursement forms with receipts. \u201cIt was limited to parking lots, train tickets, bus tickets, or mileage,\u201d he said.<\/p>\n<p>Lucy found out about travel reimbursements almost by accident. She said, \u201cI\u2019m not sure that anyone particularly told me that, but I realized that other people were doing it.\u201d<\/p>\n<p>Michele found that while the study treatment injection was provided at no cost, monthly blood draws were the responsibility of her or her insurance company. When the calendar year changed, her deductible reset, and she was suddenly paying out of pocket for blood draws for the study. \u201cI\u2019m being faced with this $1,200 bill for these blood tests,\u201d Michele told me. \u201cAnd the only reason I\u2019m getting these blood tests is so I can get this injection for the trial, and I don\u2019t even know if it\u2019s the real thing or not.\u201d<\/p>\n<p>Michele said she would have been more likely to stay with the trial if her blood tests had been covered. \u201cI had so many bills already, oh and, this is another one I just can\u2019t do it.\u201d So she left the trial.<\/p>\n<h3><strong>Solution: <\/strong><\/h3>\n<p>Reimbursement or a clinical trial participant stipend, in general, is a difficult area both in terms of perception and regulation.<\/p>\n<p>When designing trials at the protocol stage, potential patients should be consulted about what they need and what the burden of participation might be.<\/p>\n<ul>\n<li>Have you considered consolidation of study activities to reduce the number of separate times a patient needs to visit the trial site?<\/li>\n<li>Hybrid and remote solutions are always welcomed and encouraged, although most patients I speak with don\u2019t want a completely decentralized trial and want to see the medical professional in person occasionally.<\/li>\n<li>Are all hidden costs or reimbursement options clearly explained, and preferably written down for the patient, so they are aware of this prior to consent?<\/li>\n<li>Make reimbursement that helps minimize the cost of travel, an easy process for both the clinical trial participant and the site, and make sure the trial participants know about it.<\/li>\n<li>Patients frequently choose not to participate in a trial if the financial burden is too high. Consider how to minimize that burden to improve recruitment.<\/li>\n<\/ul>\n<h2><strong>Participant engagement tools<\/strong><\/h2>\n<p>All said they would have appreciated comfort items, tokens of appreciation, or thank you cards. With the exception of Koen, such items were not provided.<\/p>\n<p>Koen appreciated holiday messages. \u201cDuring Christmastime, they always send a personal postcard, to your home, from the team of the researchers, which is really received well by me personally, because that\u2019s something like emotional support,\u201d he said. \u201cThey think of you. But I think it has nothing to do with the trial itself, it\u2019s more with the attitude of the team.\u201d<\/p>\n<p>Lucy said, \u201cI would love to say they sent me a puppy dog\u2026 no, absolutely nothing, really nothing.\u201d She is still being monitored in follow-up every 3-6 months with quality of life questionnaires. \u201cMaybe if they ever finish it, there will be a thank you card and a puppy, but I think it\u2019s highly unlikely.\u201d<\/p>\n<h3><strong>Solution: <\/strong><\/h3>\n<p>Patients don\u2019t NEED gifts, comfort items, or tokens of appreciation. Without exception, all of the clinical trial participants I spoke to said such items would not have impacted whether they decided to participate.<\/p>\n<p>However, small gestures like thank you cards have minimal cost yet generate an enormous feeling of gratitude and inclusion amongst patients.<\/p>\n<p>More specific engagement tools can be implemented, like eye masks and blankets where the patient is in hospital for a long duration, and these tokens show a deeper understanding of the patient&#8217;s burden. They display a genuine interest in the patient\u2019s comfort and a desire to ensure that the patient\u2019s experience in the study is as positive as possible.<\/p>\n<p>Tokens, no matter how small, can have a dramatic difference in attrition rates because the patient doesn\u2019t feel like a number; they feel more included and valued.<\/p>\n<h2><strong>Follow-up after the trial for study participants<\/strong><\/h2>\n<p>The participants were still interested in the trial after they were no longer participating, but each found follow-up was lacking.<\/p>\n<p>Michele said she assumes there was no follow-up because she left the trial before completing it. \u201cI\u2019m actually really curious to find out whether I got the real one or the placebo, and also if the drug that they were testing is going to be coming out.\u201d<\/p>\n<p>Lucy has never received information about the trial but has followed the trial in the scientific press. \u201cWhen there was more information coming out about the trial and who it worked for and this, that, and the other, that stuff would have been really interesting,\u201d she said. \u201cI just would have liked more access to my own medical information. It seems mad to me that it\u2019s all sitting somewhere, and someone has it.\u201d<\/p>\n<p>Marilyn\u2019s trial participation was discontinued after her liver metastasized. \u201cI did feel, \u2018You\u2019re off the trial, that\u2019s it.\u2019\u201d She felt she was no longer important.<\/p>\n<h3><strong>Solution: <\/strong><\/h3>\n<p>A large number of patients I speak with take part in more than one clinical trial.<\/p>\n<p>Patients talk to other patients about trial participation and about the sponsor companies themselves.<\/p>\n<p>If the patient gets an update on the progress of the trial or a follow-up after the trial has concluded with what has happened to the drug, the patient feels included and that they helped to shape the outcome.<\/p>\n<p>That sense of satisfaction, of being involved in research to benefit others, is something that patients talk about. Even if a patient is unable to continue with the study, thank them for the time they were involved, and keep them abreast of the ongoing progress.<\/p>\n<h2><strong>Feedback from study participants about trial design<\/strong><\/h2>\n<p>I asked the participants for feedback on how their trial experiences could have been made better.<\/p>\n<p>Lucy said participants need to be treated more respectfully. \u201cMy experience particularly with that trial, the thing over time that I became increasingly aware of, is that I felt like as a patient we were very low down on the list of things that really mattered,\u201d she said.<\/p>\n<p>While in the trial, she experienced side effects. \u201cIt would have been really useful to know what drugs I was on in order to know how to treat side effects. It wasn\u2019t possible to unblind me because that wasn\u2019t the protocol. They didn\u2019t unblind me until I had progression of my disease, and that was 10 months later.\u201d<\/p>\n<p>Marilyn told me she felt treated like a number and added, \u201cOn the feedback forms, they didn\u2019t give enough width to the questions.\u201d<\/p>\n<p>Koen learned about the trial through his surgeon and says he probably wouldn\u2019t have otherwise known about the trial. \u201cAt least for life-threatening diseases, why not bring in a system, a mandatory check whether there is an opportunity for a clinical study or not? It\u2019s beneficial for the industry because the recruitment process will be more efficient.\u201d<\/p>\n<h3><strong>Solution:<\/strong><\/h3>\n<p>Patients don\u2019t want to feel like they are just a number or a dot on the chart.<\/p>\n<p>Active engagement can actually help with recruitment in future studies in your portfolio.<\/p>\n<p>Ask patients afterward what it was like to participate in the study and what might have made it better. Learn from the feedback. Evaluate and improve the design of future studies based on this.<\/p>\n<p>If you don\u2019t want to ask for feedback, the greatest message this gives is that the patient\u2019s input or opinion really doesn\u2019t matter or that you are concerned the feedback wouldn\u2019t be positive. Either way, neither of those hint at a successful study.<\/p>\n<p>Lack of requesting feedback is an indicator of shortsightedness. Feedback is an instant and easily implemented engagement tool that can help promote better trial recruitment and retention in the future. In the short term, this would have minimal cost in comparison to the huge gains long term.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-69895\" src=\"https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Patient-Centricity.jpeg\" alt=\"Patient Centricity\" width=\"800\" height=\"533\" srcset=\"https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Patient-Centricity.jpeg 800w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Patient-Centricity-300x200.jpeg 300w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Patient-Centricity-768x512.jpeg 768w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Patient-Centricity-585x390.jpeg 585w, https:\/\/www.imperialcrs.com\/blog\/wp-content\/uploads\/2022\/04\/Patient-Centricity-263x175.jpeg 263w\" sizes=\"auto, (max-width: 800px) 100vw, 800px\" \/><\/p>\n<h2><strong>Last thoughts about study participants<\/strong><\/h2>\n<p>Clinical trial participants should be thought of as customers, and their feedback should be sought out and applied. They should be a partner in the trial and engaged as valuable resources in making future trials more <a href=\"https:\/\/www.imperialcrs.com\/blog\/2022\/03\/23\/patient-engagement-in-clinical-trials\/\">patient-centric<\/a>.<\/p>\n<p>In these days of tighter budgets, cuts in patient engagement should not be an option.<\/p>\n<p>Imperial was not involved in the trials these clinical trial participants took part in. We produce an array of items for patient engagement and ship them globally for our clients every day, and would like to think that had we been involved in these trials, the participants would have had more fully positive experiences.<\/p>\n<p>My heartfelt thanks to Koen, Lucy, Marilyn, and Michele for speaking with us about their clinical trials.<\/p>\n<p>If you or your colleagues are working on a study and you believe the patients can be more actively engaged, please let us know. I\u2019d love to talk to you about your study and the ways we can help you better engage with patients to improve recruitment, retention, and most importantly of all \u2014 patient (customer) satisfaction!<\/p>\n","protected":false},"excerpt":{"rendered":"<p>My colleagues and I attend several international conferences every year. We are particularly interested in discussions surrounding clinical trial participants and patient engagement, as this is an area where Imperial is involved with support for our sponsor and CRO clients. It\u2019s reassuring to see and&hellip;<\/p>\n","protected":false},"author":16,"featured_media":69900,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[379,35],"tags":[856,860,865,869,868,857,864,859,866,861,858,870,863,862,867],"class_list":["post-69893","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-engagement","category-patient-recruitment-and-retention","tag-clinical-trial-feedback","tag-clinical-trial-involvement-stories","tag-clinical-trial-journey","tag-impact-of-clinical-studies-on-patients","tag-participant-experiences-and-reviews","tag-participant-experiences-in-clinical-studies","tag-participant-satisfaction-in-research","tag-participant-testimonials","tag-patient-engagement-in-studies","tag-patient-feedback-on-research-studies","tag-patient-perspectives-on-clinical-trials","tag-patient-centric-clinical-trials","tag-real-stories-from-clinical-trials","tag-trial-participant-insights","tag-voices-of-clinical-trial-participants"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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