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Patient education

Patients are playing an increasingly active role in their treatment process and other health-related decisions, and they need information to help them make the right choices. Providing patients with educational materials helps them make better decisions (such as whether to take part in a clinical trial, or to take a certain prescription medicines), better manage their symptoms and side-effects, and commit to their treatment or clinical trial plan.

A key component of the education process is medical writing. In the highly regulated, fast-paced pharmaceutical industry, the challenges that medical writers face in writing for patients are multi-fold. They need to craft communications that adhere to industry guidelines and legislation while using language that is informative and engaging without being overwhelming or biased. This can be particularly challenging as writers must meet the needs of diverse populations of patients with varying degrees of education and knowledge about the healthcare system.

Medical writers also need to accommodate patients’ format preferences. Not only has use of the internet for accessing health information dramatically risen, but greater possibilities now exist for delivering healthcare solutions digitally via technologies such as e-learning and apps. These technologies are becoming more commonly accepted and utilized in the industry, and are valuable additions to the patient educators’ toolkit, though there will still be patients who prefer information via printed materials, phone calls, and face-to-face meetings. In the quest to innovate, we cannot leave these populations behind.

Finally, medical writers need to customize this information for each stage of the drug development lifecycle in an effort to provide patients with the information they need, when they need it:

Recruitment for clinical trials

When recruiting for clinical trials, the primary educational goals should revolve around informing potential participants about the purpose of the study, study experience, commitment and risks, and ensuring they fully understand this information. These education materials should include information that supports informed consent, which means patients need factual, non-persuasive explanations about their participation in the trial before they sign consent forms.

Despite clear guidelines around informed consent, many studies show that clinical study participants often have insufficient knowledge or understanding about the trial, which can impact recruitment and retention negatively. To overcome these barriers researchers can bolster informed consent conversations by providing patients with printed educational materials, access to videos, graphics or other web-based information, and providing opportunities to talk with non-clinical staff to answer their questions and discuss any logistical or emotional concerns they may have.

When drafting these materials, writers must first gather insights about the specific patient population, to understand why they may or may not participate in clinical trials, what their personal challenges are likely to be, and thus personalize the approach to include messaging that will most resonate with the target audience.

Retention

Retaining patients in clinical trials and real-world studies is vital to gathering consistent, accurate information about the effects of an investigational product and protecting patients’ safety. Making education and engagement a key part of the study plan can improve retention by ensuring patients understand the importance of the study, and the value their participation brings to the research.

Depending on the needs of the patients and the goals and duration of the study, the format of this education may range from simple automated text messages that sends motivational, informational and reminders at set points in time, to a comprehensive, multi-channel communication program that engages patients via multiple touchpoints throughout the life of the study.

Regardless of the platform, researchers should establish a clear purpose for the overall communication strategy—i.e., drive retention and commitment to the treatment plan—as well as for individual messages. When creating these programs it is important to remember that the same constraints and ethical considerations that are used for informed consent should be applied to these communiques.

For longer studies, researcher may want to periodically measure the impact of their messages, so they can identify best practices and adjust where necessary.

Commercialization

Patients are more in control of their own health and treatment decisions than ever before, and they will often pursue information about multiple treatment options before agreeing to a treatment plan. If biopharma companies want to ensure patients get the most accurate information about their products and benefit propositions, they need to create and disseminate educational materials as part of their commercialization strategy.

The information patients need change over the course of their treatment journey, and will differ depending on factors such as their age, education, and comfort with technology. Medical writers need to take these factors into consideration when creating and disseminating information.

  • Prior to diagnosis, disease awareness campaigns (DACs) play an important role of supporting earlier diagnosis, enabling earlier treatment and delivering better outcomes. They can include decision aid tools that provide evidence-based information about options and outcomes, materials that physicians can share with patients that lay out the benefits and risks of a treatment, and media/social media to educate and inform targeted patient populations about their options.
  • At the point of diagnosis, patients need sufficient information to fully understand the condition—including prognosis, the treatment pathway and potential risks and benefits of the different therapy options.
  • At treatment initiation, patients should be informed about the available choices and their benefits and risks so that they can actively participate in the treatment decision.
  • For chronic conditions, patient education initiatives may focus on supporting long-term management of the condition. Personalized patient support programmers (PSPs) can be used at this point to bridge the gap between scheduled appointments and daily management by offering support services and information via helplines, face-to-face meetings, or digital communications.
  • Throughout the treatment journey, patient education plays an important role in influencing patients to take their medication exactly as prescribed. Reminder texts, follow-up calls, and information about the negative impact of not taking their medication can all positively influence adherence.

Education is worth the effort

From clinical trials to commercialization, there are always good reasons to inform, engage and educate patients. When biopharma companies invest the time and thought into crafting targeted, relevant messages and provide them in formats and language that are most meaningful to patients, they improve the time, cost and outcome of their research and commercialization efforts while delivering a more positive experience for their patients.