For life sciences companies building their disease awareness websites or patient portals, keeping user experience (UX) and user interface (UI) best practices in mind is an essential part of building patient centricity. Disease awareness websites empower patients and caregivers by providing them with an accessible resource to educate themselves and initiate further conversations with their healthcare providers. By keeping empathy at the center when creating disease awareness sites, companies can ensure good UX and allow patients and their family members and caretakers to feel more educated, empowered, and engaged in their health.  

UX/UI Best Practices for Disease Awareness Websites

1. Define your core user group, and tailor your site’s design to those users. 

When defining users, it’s important to go beyond the Healthcare Professionals (HCPs) and patients and think also of caregivers. While it’s necessary to have a sister site for healthcare professionals, a tailored set of materials and a similar user experience should be available to caretakers on the same site as patients. This can be informed by the role the caregiver plays in the patient’s disease journey and will vary depending on if the disease is pediatric, debilitating, etc. For all diseases, but especially rare ones, it’s important to tailor disease awareness websites with appropriate and accessible resources for both patients and caregivers.  

2. Ensure patients can quickly find the information they need 

When designing disease awareness websites or patient portals, businesses should keep users and their motivation and goals at the forefront. Instead of big walls of text, keep users invested and enable them to easily navigate the site, such as by encouraging interactive exploration with simple text to show actual patient journeys and the impact the disease had on their life.  

In reference to the actual disease your site focuses on, consider the conditions of the disease and the specific ages and demographics it affects. By removing hurdles and creating designs and interfaces that are accessible to the target disease population, you can ensure your design is even more inclusive.  

Beyond search boxes, chatbots also increase accessibility by using AI to create a one-on-one experience and present human-like answers to user questions. It enhances the experience of using the site by directly answering in the box and acting as a search tool to direct users to the page and/or page section they need. Also, chat boxes are a great data-gathering tool to understand what questions users typically have when they come to your site, providing visibility into how you can further improve the site and ensure patients are finding what they need.   

3. Build patient trust 

It’s important to be mindful of patients’ medical skepticism of online information. Findings from a recent study found that physician authorship with an objective tone was viewed more credibly by patients. Furthermore, patients with higher skepticism preferred article-style formatting, while those with lower skepticism preferred discussion forum-style formatting. By providing a blend between the two, you can be sure users with varying levels of skepticism are receptive to the information. Reducing skepticism and building trust with users is critical for getting and keeping patients engaged in their health.  

In hand with medical skepticism, there are greater concerns with data management. It’s advised to provide the user with value as soon as they land on the website rather than requiring registration or data input at first click. When forms are needed, it’s important to be transparent as to what the data will be used for, which is critical to adequately tailoring future communications to the user experience and allowing them to feel more comfortable with the data they’ve provided.  

Patient-Centered Design Next Steps  

As your company builds out your rare disease awareness website, keep your patient at top of mind, and don’t underestimate the role that design can play in user experience. If your business is looking for ways to realize the benefits of good UX in your patient journey, let’s chat.

Contributions from Elizabeth Osota