3 Factors, from the patient's point of view, that improve Patient Engagement

Posted by Aidan Gannon on Oct 22, 2018 10:00:28 AM
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The following is an excerpt from our ebook “How to Make Your Trial A True Team Effort." Click here to download the ebook in its entirety.

 

Feeling Well Informed

We’re constantly hearing from patients and site staff that it’s important for them to feel well informed about a trial. For patients, it’s about knowing what to expect when they attend their site visits, and to feel they can trust and have confidence in the trial process. This means providing trustworthy, clear and timely information.

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But, today, this means standing out among the many other resources that patients use: clinical trial databases, medical literature, digital health content (such as WebMD; and social media, such as Twitter, Facebook groups, and YouTube). Friends, family, and other clinicians are likely to be asked for their advice, too. Although this means that you are catering to a more health-educated audience, study teams have much less control over the information patients receive about trials and their treatment.  

 

 Your patient information ideally needs to be:

  • Branded such that it is clearly associated with the study
  • Delivered in clear patient-friendly language
  • Tailored, as much as possible, to your different patient groups
  • Available through multiple communication channels (print, web, mobile)
  • Up-to-date - reflecting the latest protocol 
  • Dynamic - providing the most pertinent information as the patient progresses through the study

 

Just as crucially, your site staff need to be well trained and equipped to explain the study well, reflecting the latest protocol versions and amendments. We heard from site staff that there is a lack of consistency in protocol formats, and that, in the absence of source documents and/or checklists provided by the study team, they will often create their own. This means each site will have different, non-controlled documents as their go-to guides, which the study team will never have seen. 

Well considered toolkits for study teams, and the ability to ask questions, can help site staff to feel they have a two-way dialogue with the study team, enabling them to raise issues earlier and, ultimately, improve compliance. 

 

Being Part of the Team

We know that some patients are motivated to join and stay on a trial because they feel they are ‘giving something back’. Many will also be interested in the science of the study they are taking part in, and keen to hear about its progress.

But this idea of being part of the greater good is not limited to patients; it’s just as important for motivating site staff too. A recent experiment by Stanford University scientists showed the benefits of even just “feeling” part of a team to be highly significant.

Researchers created two control groups, and asked individuals within each group to carry out the same task. Within the groups, each individual was acting alone using precisely the same tools, support, and instructions. However, one group was given a series of subtle cues to make them feel like they were working together as a team.

When people were treated as though they were working together they:

  • Persisted 48 to 64 percent longer on a challenging task
  • Reported more interest in the task
  • Became less tired by having to persist on the task - presumably because they enjoyed it
  • Became more engrossed in the task and performed the task better

What’s more, the researchers noted that it does not take enormous effort and change to create this feeling of togetherness. Subtle cues that signal people are part of a team or larger effort ignites motivation and effort.

That’s why every touchpoint with your patients and site staff is an opportunity to create a sense of ‘team’. For patients, consider the patient’s journey from the initial trial awareness and recruitment, to trial completion. Where and how could you use different touchpoints to communicate progress as the trial progresses? How will you communicate the results, especially as the end of a trial can feel unsettling for patients?

For site staff, think ‘partnership’. Working together to set up the trial can help anticipate any site-specific issues, and determine agreed ways of working upfront. Look for ways to establish a two-way dialogue that can continue throughout the study.

Harness technology as your helping hand in making regular interaction possible, especially given the complexity and scale of trials today.

 

Seamless and Smooth Site Visits 

Patients do notice operational issues, and many will become frustrated by them. Inconveniently timed appointments or difficult site locations can also be particularly hard for some patients if they are very unwell. Smoothly operated trials that put the patient at the heart of the process make the difference between a good patient experience or a bad one.

Yet, even the most competent and well-intentioned site teams cannot run a slick, patient-centric operation if they are not fully engaged and up-to-speed with the study.

Consider the following questions when thinking of your sites:

  • Is everyone well prepared?
  • Is everyone well informed?
  • Is there adequate equipment?
  • Are site teams prepared for the additional support required by patients in a clinical trial?
  • Do site teams have the information at their fingertips to make the most of the patients' site visits?

If the answer to all these questions is Yes, then your patients and site staff are likely to have an overwhelmingly positive experience.

If Not, you may want to consider how you can consistently provide sites with a better technological, experiential, or management toolset to deal with the amount of information you’re sending them, and make the experience a better one.

The following is an excerpt from our ebook “How to Make Your Trial A True Team Effort." Click here to download the ebook in its entirety.

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Topics: Clinical Research Conduct, clinical trial training, Clinial trial sites, clinical site support, clinical trial protocol training, patient engagement, Patient Compliance