Feature

Physicians weigh risks, rewards of social media for clinical trial recruitment

Photo of Mina Sedrak 2018
Mina Sedrak

Less than 5% of eligible adults participate in cancer clinical trials, even in the information age when more opportunities exist than ever before to raise awareness of these trials and facilitate patient recruitment.

Research suggests physicians who design and conduct clinical trials play a critical role in recruitment simply by bringing up the topic with patients, whereas mounting evidence indicates physicians who promote available trials via social media have a positive impact on trial enrollment.

Nevertheless, many physicians who participate in clinical trials harbor concerns about the use of social media channels to increase trial participation, according to results of a study published in JAMA Open Network.

Mina S. Sedrak, MD, MPH, a HemOnc Today Next Gen Innovator, breast cancer oncologist and assistant professor in the department of medical oncology and therapeutics research at City of Hope, and colleagues conducted a qualitative study of 44 oncologists (36% women) at City of Hope who had more than 10 years of experience to assess their perspectives on the use of social media to increase clinical trial participation. Twenty-four of the physicians practiced in academic settings, whereas 20 practiced at community sites.

The physicians identified several positive impacts that social media could have on clinical trial recruitment, including by increasing visibility and awareness of trials and boosting patient engagement, as well as improving communication. Disadvantages identified by respondents included increased administrative burden, risk for providing misinformation and limited outreach. They also cited a need for more guidance on how to best conduct social media engagement.

Dale_William_80x106
William Dale

Healio spoke with William Dale, MD, PhD, the Arthur M. Coppola family chair in supportive care medicine, director of the Center for Cancer & Aging at City of Hope and a co-author of the study, to get his perspective on the results and how they can be applied in practice to increase clinical trial participation, both in cancer and more generally.

Question: What was the rationale behind this study?

Answer: This study was part of a broader research agenda intended to improve clinical trial enrollment, with a focus on people who traditionally have not been enrolled in clinical trials. This study targets the attitudes of the physicians involved in enrolling patients into clinical trials.

Q: Does the low rate of participation in cancer clinical trials have a negative impact on the development of effective therapies?

A: One of the biggest challenges in cancer research is that clinical trial enrollment is so low — you might even say dismal, depending on the circumstances. Of those patients who are eligible for being enrolled in a clinical trial, the rate of enrollment is in the single digits in some studies. This is seen as a problem because many of the newest therapeutics are being offered to patients only through clinical trials.

Q: Is your research attempting to identify those patients with the lowest rates of enrollment who can be targeted for increased participation?

A: That’s exactly right. Because enrollment is so low and those who enroll in trials are often quite different from the overall cancer population being diagnosed, the demographic profile of the patients we have been studying through trials are quite different than those who typically get cancer. For example, most patients enrolled in trials are aged younger than 65 years, yet the majority of patients diagnosed with cancer are aged older than 65 years. Until we have more representative groups enrolled in trials, then we will continue to guess whether approved drugs and the standard of care really apply to most people with cancer.

Q: What were the key takeaways of your research?

A: Physicians agreed that the use of social media to recruit for clinical trials has increased awareness about available trials, including among physicians. The negatives included that social media as a recruitment tool can become another burden on those who are administering trials. Concerns also exist about the lack of regulatory oversight of the information being presented about trials via social media.

Social networks were seen as potential facilitators of increased trial participation. Social media users may tell others, which could lead to a ballooning of the study population as people talk to each other. If the information is accurate, it becomes a worthwhile educational opportunity. Barriers included the time involved in effectively engaging in social media and providing content for it. Another concern was the current lack of evidence to show that these efforts will translate into increased trial enrollment.

Q: Did any results surprise you?

A: We hypothesized that physicians at an academic site, like the main campus at City of Hope, would have different opinions regarding the use of social media than those who practiced at a primarily community-based site. However, there wasn’t much difference of opinion between the two groups. This is potentially a positive finding, in that there seems to be fewer barriers to knock down, regardless of the practice site. The major opinion differences seem to be centered around age and amount of clinical experience, with younger physicians more likely to use social media.

Q: Do you find that oncologists are more comfortable using social media than other medical specialists?

A: I’ve been impressed with how much the oncology community — namely ASCO and the clinical practice community — have embraced social media, particularly Twitter. For instance, through the social media task force, ASCO has provided opportunities for doctors to learn how to use social media effectively and be savvy in our social media use. Because so much of cancer research is dependent on clinical trials, we see the use of social media as an opportunity to advance science in the field through increased participation in trials.

Q: Did physicians raise concerns about barriers between personal and professional use of social media?

A: Physicians tend to interact primarily with each other using social media rather than with patients directly. Beyond that, they tend to communicate with other institutional personnel or members of the media. Many physicians, for understandable reasons, are unnerved by using social media to communicate with patients. I have been contacted directly by patients via social media, which is OK with me. But I segregate my social media use between Twitter, which is more public and open, and Facebook, which is more personal and primarily for family or friends. I would also invite patients to communicate via LinkedIn, which is much more clearly in the professional realm. On LinkedIn, an announcement about a study would go out in a very formal way compared with a much more informal announcement via a platform such as Twitter.

Q: Can social media raise awareness about available trials while not influencing participation rates?

A: Evidence is starting to accumulate that when a scientist discusses their research online via social media, there is more awareness of the results and subsequent citations to it tend to increase. If used correctly, social media use can lead to increased citations, which is captured through sites like Altmetric. With the volume of information coming through social media these days, the optimist in me thinks that promoting trials through these channels will ultimately translate into increased participation, at least among some groups.

Q: Could using social media to promote trial participation skew the results of studies, for example, by disproportionally reaching people with internet access?

A: Currently, we are selective about who accesses clinical trials. Those with greater resources tend to have better access to trials — they can get to large academic centers where trials are conducted, their social networks connect them with trials and they have better transportation to travel longer distances to participate in trials. So, as mentioned earlier, the population of trial participants is already fairly skewed toward those with more resources. So, I suspect if we get more people aware through social media, we can get enrollment that is more representative of the entire population with cancer. There will always be the challenge of participation for certain groups that do not have ready access to the internet. Using social media may skew clinical trial involvement toward younger people, although older adults will likely benefit from their younger family members and caregivers, who may be more involved with social media and are tied more closely into the raised awareness via social networks.

Q: Is there anything else that clinicians should know about this topic?

A: The institutional barriers preventing clinical trial participation are starting to come down, so the opportunities to enroll have never been better. Now, the issue is to get patients and physicians more actively engaged in the trial enrollment process. In previous studies, the biggest reason why patients didn’t enroll in a clinical trial was that their physician didn’t ask them to, for whatever reason. It’s the job of physicians to engage all their patients in the clinical trial process, regardless of age, gender, race or socioeconomic status. Once this physician engagement has occurred, patients will follow. – by Drew Amorosi

References:

Comis RL, et al. J Oncol Pract. 2009;doi:10.1200/JOP.0922001.

Denicoff AM, et al. J Oncol Pract. 2013;doi:10.1200/JOP.2013.001119.

Sedrak MS, et al. JAMA Netw Open. 2019;doi:10.1001/jamanetworkopen.2019.11528.

For more information:
William Dale, MD, PhD, can be reached at City of Hope Comprehensive Cancer Center, 1500 East Duarte Road, Duarte, CA 91010, or on Twitter @WilliamDale_MD.

Disclosures: Dale reports no relevant financial disclosures.

Photo of Mina Sedrak 2018
Mina Sedrak

Less than 5% of eligible adults participate in cancer clinical trials, even in the information age when more opportunities exist than ever before to raise awareness of these trials and facilitate patient recruitment.

Research suggests physicians who design and conduct clinical trials play a critical role in recruitment simply by bringing up the topic with patients, whereas mounting evidence indicates physicians who promote available trials via social media have a positive impact on trial enrollment.

Nevertheless, many physicians who participate in clinical trials harbor concerns about the use of social media channels to increase trial participation, according to results of a study published in JAMA Open Network.

Mina S. Sedrak, MD, MPH, a HemOnc Today Next Gen Innovator, breast cancer oncologist and assistant professor in the department of medical oncology and therapeutics research at City of Hope, and colleagues conducted a qualitative study of 44 oncologists (36% women) at City of Hope who had more than 10 years of experience to assess their perspectives on the use of social media to increase clinical trial participation. Twenty-four of the physicians practiced in academic settings, whereas 20 practiced at community sites.

The physicians identified several positive impacts that social media could have on clinical trial recruitment, including by increasing visibility and awareness of trials and boosting patient engagement, as well as improving communication. Disadvantages identified by respondents included increased administrative burden, risk for providing misinformation and limited outreach. They also cited a need for more guidance on how to best conduct social media engagement.

Dale_William_80x106
William Dale

Healio spoke with William Dale, MD, PhD, the Arthur M. Coppola family chair in supportive care medicine, director of the Center for Cancer & Aging at City of Hope and a co-author of the study, to get his perspective on the results and how they can be applied in practice to increase clinical trial participation, both in cancer and more generally.

Question: What was the rationale behind this study?

Answer: This study was part of a broader research agenda intended to improve clinical trial enrollment, with a focus on people who traditionally have not been enrolled in clinical trials. This study targets the attitudes of the physicians involved in enrolling patients into clinical trials.

PAGE BREAK

Q: Does the low rate of participation in cancer clinical trials have a negative impact on the development of effective therapies?

A: One of the biggest challenges in cancer research is that clinical trial enrollment is so low — you might even say dismal, depending on the circumstances. Of those patients who are eligible for being enrolled in a clinical trial, the rate of enrollment is in the single digits in some studies. This is seen as a problem because many of the newest therapeutics are being offered to patients only through clinical trials.

Q: Is your research attempting to identify those patients with the lowest rates of enrollment who can be targeted for increased participation?

A: That’s exactly right. Because enrollment is so low and those who enroll in trials are often quite different from the overall cancer population being diagnosed, the demographic profile of the patients we have been studying through trials are quite different than those who typically get cancer. For example, most patients enrolled in trials are aged younger than 65 years, yet the majority of patients diagnosed with cancer are aged older than 65 years. Until we have more representative groups enrolled in trials, then we will continue to guess whether approved drugs and the standard of care really apply to most people with cancer.

Q: What were the key takeaways of your research?

A: Physicians agreed that the use of social media to recruit for clinical trials has increased awareness about available trials, including among physicians. The negatives included that social media as a recruitment tool can become another burden on those who are administering trials. Concerns also exist about the lack of regulatory oversight of the information being presented about trials via social media.

Social networks were seen as potential facilitators of increased trial participation. Social media users may tell others, which could lead to a ballooning of the study population as people talk to each other. If the information is accurate, it becomes a worthwhile educational opportunity. Barriers included the time involved in effectively engaging in social media and providing content for it. Another concern was the current lack of evidence to show that these efforts will translate into increased trial enrollment.

Q: Did any results surprise you?

A: We hypothesized that physicians at an academic site, like the main campus at City of Hope, would have different opinions regarding the use of social media than those who practiced at a primarily community-based site. However, there wasn’t much difference of opinion between the two groups. This is potentially a positive finding, in that there seems to be fewer barriers to knock down, regardless of the practice site. The major opinion differences seem to be centered around age and amount of clinical experience, with younger physicians more likely to use social media.

PAGE BREAK

Q: Do you find that oncologists are more comfortable using social media than other medical specialists?

A: I’ve been impressed with how much the oncology community — namely ASCO and the clinical practice community — have embraced social media, particularly Twitter. For instance, through the social media task force, ASCO has provided opportunities for doctors to learn how to use social media effectively and be savvy in our social media use. Because so much of cancer research is dependent on clinical trials, we see the use of social media as an opportunity to advance science in the field through increased participation in trials.

Q: Did physicians raise concerns about barriers between personal and professional use of social media?

A: Physicians tend to interact primarily with each other using social media rather than with patients directly. Beyond that, they tend to communicate with other institutional personnel or members of the media. Many physicians, for understandable reasons, are unnerved by using social media to communicate with patients. I have been contacted directly by patients via social media, which is OK with me. But I segregate my social media use between Twitter, which is more public and open, and Facebook, which is more personal and primarily for family or friends. I would also invite patients to communicate via LinkedIn, which is much more clearly in the professional realm. On LinkedIn, an announcement about a study would go out in a very formal way compared with a much more informal announcement via a platform such as Twitter.

Q: Can social media raise awareness about available trials while not influencing participation rates?

A: Evidence is starting to accumulate that when a scientist discusses their research online via social media, there is more awareness of the results and subsequent citations to it tend to increase. If used correctly, social media use can lead to increased citations, which is captured through sites like Altmetric. With the volume of information coming through social media these days, the optimist in me thinks that promoting trials through these channels will ultimately translate into increased participation, at least among some groups.

Q: Could using social media to promote trial participation skew the results of studies, for example, by disproportionally reaching people with internet access?

A: Currently, we are selective about who accesses clinical trials. Those with greater resources tend to have better access to trials — they can get to large academic centers where trials are conducted, their social networks connect them with trials and they have better transportation to travel longer distances to participate in trials. So, as mentioned earlier, the population of trial participants is already fairly skewed toward those with more resources. So, I suspect if we get more people aware through social media, we can get enrollment that is more representative of the entire population with cancer. There will always be the challenge of participation for certain groups that do not have ready access to the internet. Using social media may skew clinical trial involvement toward younger people, although older adults will likely benefit from their younger family members and caregivers, who may be more involved with social media and are tied more closely into the raised awareness via social networks.

Q: Is there anything else that clinicians should know about this topic?

A: The institutional barriers preventing clinical trial participation are starting to come down, so the opportunities to enroll have never been better. Now, the issue is to get patients and physicians more actively engaged in the trial enrollment process. In previous studies, the biggest reason why patients didn’t enroll in a clinical trial was that their physician didn’t ask them to, for whatever reason. It’s the job of physicians to engage all their patients in the clinical trial process, regardless of age, gender, race or socioeconomic status. Once this physician engagement has occurred, patients will follow. – by Drew Amorosi

References:

Comis RL, et al. J Oncol Pract. 2009;doi:10.1200/JOP.0922001.

Denicoff AM, et al. J Oncol Pract. 2013;doi:10.1200/JOP.2013.001119.

Sedrak MS, et al. JAMA Netw Open. 2019;doi:10.1001/jamanetworkopen.2019.11528.

For more information:
William Dale, MD, PhD, can be reached at City of Hope Comprehensive Cancer Center, 1500 East Duarte Road, Duarte, CA 91010, or on Twitter @WilliamDale_MD.

Disclosures: Dale reports no relevant financial disclosures.

    See more from Social Media in Practice