Survey: patient engagement a low priority in clinical trials

To what extent is patient engagement really valued and acted upon by pharma companies, CROs and hospitals – and what are the most effective methods to retain participants in clinical trials?  

The seemingly endless challenge of recruiting patients for clinical trials has driven a variety of patient engagement approaches in recent years, on the assumption that improved patient engagement will encourage repeat participation, as well as clinical trial advocacy with friends, families and online communities. These initiatives vary from company to company and utilise different approaches to address various parts of the process. Among the key strategies are:

  • Designing studies with patients in mind, using patient feedback to better understand patients’ desired clinical outcomes
  • Broadly engaging patients in clinical trials through education and benefit statements
  • Ensuring thorough understanding of participation in a specific clinical trial by thoughtful presentation of the information patients need to make an informed decision
  • A variety of techniques for engaging patients throughout the study to encourage retention
  • Engaging patients post-study to reinforce their important role in helping others with the disease and their contribution to the discovery of new medicines, therapies and devices.

In late 2017, SCORR Marketing, in conjunction with Applied Clinical Trials, conducted a survey to get a better understanding of how sponsors, contract research organisations (CROs), research sites and hospitals are engaging patients throughout the clinical development process. Participants in the survey represented a variety of job functions and company sizes from around the world, although more than half of the respondents were from North America.

Poor participation in patient engagement initiatives

While patient engagement has been a hot topic across the industry for some time, actual investment in patient engagement initiatives was found to be weak, at best.

Despite growing evidence of the benefits of doing so, more than a third (41%) of the respondents’ companies did not solicit feedback from patients at all. Of the companies that did integrate patient perspectives, most used surveys, followed by patient communities and patient advocacy groups; 13% indicated that they used other methods. However, when respondents were asked to prioritise their companies’ long-term goals for patient engagement initiatives, half responded that they wanted to determine which outcomes were important to patients, 41% hoped to increase patients’ potential inclusion in future studies, and a third responded that they anticipated their outreach would encourage patients to be clinical trial advocates in the future.

Low budget priority

Compared to other costs of clinical studies, the survey suggested that many companies simply saw patient engagement as a low priority. More than a quarter of respondents (26%) said a lack of money in the budget was the most significant challenge to the implementation of patient engagement initiatives, while almost one-third (32%) said budgets had the greatest effect on the extent of their company’s future patient engagement initiatives. With so much concern over finances, it is not surprising that a plurality (36%) of respondents said that patient engagement initiatives at their company would increase only a little over the next two years.

CROs are especially unlikely to have dedicated patient engagement personnel; only 13% of CRO respondents reported that they did. On the other hand, pharma and biopharma companies were the most inclined to have dedicated patient engagement personnel (38%). A total of 61% of respondents from research sites, and 88% from CROs, said they did not have a dedicated person or department responsible for patient engagement.

Who engages in patient engagement and why

About half of those who work at research sites (52%) or CROs (50%) said their organisations did not solicit input from patients, while smaller companies – of 1,000 employees or fewer (48%) – sought patient input less often than large companies (28%). Survey participants involved in patient recruitment (53%) were the most likely to report that their companies had a person or department primarily responsible for patient engagement. Project managers (27%) or respondents in clinical operations (also 27%) were the least likely.

Regarding the purpose of patient engagement initiatives, the survey found companies largely engaged patients to educate them about clinical trials and remind them about appointments and dosing. Only 38% responded that the initiative was to create a mechanism for patients to ask additional questions and just a third engaged patients to share results of the trial.

Patient retention was the key metric for more than half of respondent companies (53%), while 47% measured patient adherence to protocol. According to survey respondents, nearly a quarter (24%) had no patient engagement metrics. Perhaps surprisingly, large companies (42%) were more than twice as likely NOT to use patient engagement metrics as small companies (17%).

Is technology the answer?

Technologies, from wearables to mobile devices, are changing the clinical trial landscape. With easily accessible email and instant messaging, it may have been expected that communications would change as well, but one of the more interesting findings of the study was that traditional methods of patient interaction were the most effective: in-person contact, followed by phone interactions. The value of mHealth and companion apps was uncertain among respondents, with 21% saying patient retention technologies did not improve ROI and 43% being unsure.

The recent Veeva/Tufts Center for Study of Drug Development ‘2017 eClinical Landscape study’, which states that ‘the time it takes companies to design and release clinical trial databases is having a negative impact on conducting and completing trials’  suggests better data integration tools may be required before meaningful patient engagement ROI can be determined for some newer technologies. However, respondents from larger companies (41%) were more than twice as likely to report that technological innovations, such as a patient website, positively impacted ROI as those from smaller companies (16%). A total of 46% of respondents reported that no technology tools were needed for clinical trial participation; a third required a smart phone and just 20% required a computer or laptop.

Although patient engagement remains a popular topic and many companies are making forays into the field, responses from this survey indicate that there is ample opportunity for more companies to do more to engage patients at all stages of a study, to improve design and the patient experience. For now, however, the most effective means to engage patients in clinical research is the old-fashioned human approach – talking with them face to face.

About the author:

Anne-Marie Hess is a Senior Strategic Advisor/Market Intelligence at SCORR Marketing, who has specialised in marketing, communications and investor relations at global life sciences companies, such as PharmaNet and Cambrex.

She joined SCORR team as senior strategic advisor having been a client when she was the vice president of marketing at PharmaNet.

She leads the market intelligence team, creating and executing strategic marketing and communication plans to build awareness, educate stakeholders and enhance reputation.

She holds a bachelor’s degree in chemical engineering.

Read more on patient-centric initiatives in the latest edition of pharmaphorum’s magazine, Deep Dive: Patient Centricity II.