Empowering Patients in the Digital Age: New Framework to Measure and Improve Patient Digital Experiences

The rapid growth of technology within the health care sector, together with evolution of consumer experiences, is transforming the way patients manage their health care. As the utilization of various websites, portals, and applications continues to rise, the importance of user experience (UX) in health care technology becomes increasingly evident.1, 2, 3, 4, 5 At the same time, exceptional UX offered by consumer brands (such as Google, Amazon, or Netflix) has shaped the public’s expectations for digital experiences offered by other industries, including health care.⁶ Patients expect health care brands to provide the same level of seamless, user-centered interaction, but they rarely receive it.7, 8, 9

However, UX is especially important when it comes to digital platforms that can directly influence access to therapy and other health care services. Addressing the unmet needs of patients through intuitive and seamless UX can have a profound impact, extending to vital aspects, such as improving medication adherence and patient outcomes.^2,9, 10, 11

The Challenge of Understanding and Meeting Patients’ Digital Needs

In our many years of conducting studies with patients, we always felt that there was no framework that accurately measures the modern digital experience of patients. System Usability Scale (SUS) is the most commonly used scale for measuring usability. It was created in 1986 and has not changed much since.¹² However, SUS is not health care specific and asks the users to answer 10 fairly general questions, such as “I found the system unnecessarily complex” and “I felt very confident using the system.”

Net Promoter Score is even more generic because it includes a single-question survey asking the respondents how likely they are to recommend a product or service to a friend or colleague. This measures overall brand perception in a way that is not applicable to many patient experiences.¹³

As we were using SUS and the Net Promoter Score to test digital health care experiences with patients, we increasingly realized that these models do not measure many aspects that are instrumental to the world-class digital patient experience.

To understand and bridge the gap between patients’ expectations when it comes to digital health care and the UX that they typically experience, we developed a framework to evaluate, measure, and potentially improve patient centricity of a digital experience: the Digital Experience Scale for Patients (DES/P).¹⁴

The Approach to Developing the DES/P

The DES/P framework is based on 15 separate studies over the course of 5 years, which included 133 patients across 6 therapy areas (cardiovascular and metabolic diseases, immunology, infectious diseases, neuroscience, oncology, and pulmonary hypertension). The studies involved interviews and user testing of digital properties created for patients across these therapy areas. We then created an affinity map to categorize patient feedback on their needs and preferences related to their digital health care experiences.¹⁵

Each time a patient expressed a preference or highlighted an issue during the interview or testing phase, we allocated it to a specific category, such as empathy, navigation, and ease-of-use, among others. This method of organization enabled us to pinpoint and concentrate on the most commonly referenced elements of the patient experience. In the course of the categorization process, certain categories became prominent, owing to their recurrent mention by patients. We recorded these instances, which uncovered a trend in patient priorities and challenges within the realm of digital health care.

To further corroborate our results, we conducted a review of relevant literature. The objective of this study was to confirm the significance of the categories that had surfaced in our research. Our aim was to verify that these categories aligned with findings from other researchers and mirrored wider trends and necessities in health care UX and the overall digital UX. This thorough methodology permitted us not just to chart but also to authenticate the principal components that shape and influence the patients’ experience in digital health care.¹⁵ The results of the affinity mapping ultimately boiled down to 12 distinct criteria grouped into 3 categories as something that an average patient wants and expects in their digital journey.¹⁵

Unveiling Patient Perspectives and Expectations

Through interviews, user testing with a diverse group of patients, and affinity mapping patient responses, 3 central categories emerged that are pivotal to providing a patient-centered experience: value, simplicity, and connectivity. Some of the criteria within these categories or the importance of the criteria may vary from patient to patient. However, over the course of 15 studies and the literature review, both described in the previous section, we were able to validate that ultimately the 12 criteria organized in the following 3 categories matter the most.

Category 1: Value

Patients emphasized the importance of understanding the value proposition of the digital product or program. They seek tangible benefits and outcomes that directly contribute to their well-being. Transparent and empathetic communication about the advantages and impact of these offerings plays a pivotal role in engaging patients and fostering their participation.

To provide a more in-depth look from a patient’s perspective, following are the criteria or the questions that patients may ask as they are interacting with a health care digital product (eg, website, portal, and application):

• •Criteria 1: Benefits. Does this website (application) provide significant value to me?
• •Criteria 2: Empathy. Do I feel supported and empathized with?
• •Criteria 3: Trust. Do I trust this website (application) with my data and believe the claims and promises it made?
• •Criteria 4: Personalization. Does this website (application) cater to my unique needs and preferences?

Category 2: Simplicity

Simplicity also emerged as a core requirement for patients. The digital products and interfaces should be intuitive and easy to navigate and understand, ensuring that patients can effortlessly access the resources and services they need. By eliminating complexity and reducing cognitive load, health care technology can empower patients to take charge of their health without feeling overwhelmed and giving up.

The questions that patients tend to ask in this case are as follow:

• •Criteria 5: Navigation. Can I readily find and discover important information?
• •Criteria 6: Ease-of-Use. Is completing the necessary steps easy and frictionless?
• •Criteria 7: Guidance. Do I have guidance and support throughout the process?
• •Criteria 8: Language. Can I understand the language and instructions easily?

Category 3: Connectivity

Patients expressed the need for a connected and consistent experience across various services provided by a brand or organization. Fragmented experiences and disjointed interactions can cause frustration and hinder engagement. Establishing seamless connectivity and ensuring that different components of a support program or digital product work together harmoniously and offer further support fosters engagement and enhances the overall UX.

From the patient’s perspective, the following questions are important to consider:

• •Criteria 9: Completeness. Can I accomplish everything I need?
• •Criteria 10: Access. Can I easily access this website (application) across my devices?
• •Criteria 11: Social Proof. Do I feel like this website (application) can help patients like me?
• •Criteria 12: Community. Do I feel like I am not on my own?

DES/P Scoring System

Digital Experience Scale for Patients measures the effectiveness of patient digital experience by evaluating the abovementioned 12 distinct criteria on a scale from 1 (poor) to 10 (excellent). The average score is then calculated across all criteria to produce a DES/P score representing the overall experience of a patient. The scoring system closely mirrors that of SUS, which has been the gold standard for measuring UX for nearly 40 years.¹²

Criteria are also grouped into 3 categories: value, simplicity, and connectivity. Each category also has its own score, allowing to pinpoint “problematic” areas of the patient experience.

We have used DES/P to test the quality of patient experience with patient support portals, medication websites across different therapy areas,patient enrollment, and sign-up for various support programs. Typically, patients complete a digital version of the DES/P questionnaire; however, a paper copy¹⁴ can be made available if the tester and/or the patient prefer it.

A score of 9 to 10 is considered an exceptional, world class, and a fully patient-centric experience. Anything more than 8 is considered an outstanding, best-in-class experience that is mostly patient-centric and addresses most of their needs. A score of 7 is considered good or an okay experience that is mostly acceptable for most patients. Six is the lowest passing grade that’s satisfactory for some, but not all patients. Anything below 6 signals multiple UX or usability problems. It's not a satisfactory or a passing score, which suggests that patient UX needs improvement. And anything below 3 signals serious UX or usability problems that should be immediately addressed.

The number of patients needed to participate in a study of any digital experience is 5 to 15. An average score of at least 5 patients will result in a somewhat statistically accurate score and has been proven to uncover 85% of usability problems.¹⁵ Studies conducted with 5 to 15 patients will result in more statistical accuracy (90%-95%). If there is an outlier (a result that deviates from the rest by at least 50%), it is advisable to increase the sample size to at least 15 patients to ensure accuracy of the study.¹⁶

Although the number of users required to uncover usability problems may seem low, it is based on the extensive research by the Nielsen Norman Group—the world leaders in research-based UX with more than 30 years of experience.¹⁶ Our own experience in the health care UX suggests that the same number of users is sufficient to test the overwhelming majority of digital health care experiences as long as the users are representatives of the target patient demographic. It is also important that the same team members who designed or built the experience are not conducting the study to avoid potential bias.

Correlating DES/P With Industry Standard

Finally, we validated the DES/P scoring system by correlating the scores obtained with DES/P with those obtained with SUS when evaluating the same 3 digital properties. This comparative analysis included 21 patients (age, 44-73 years; 57% male/43% female).¹⁷

The analysis identified a significant correlation between the overall scores from DES/P and SUS frameworks. A combined analysis of multiple studies where both DES/P and SUS scores were gathered revealed a correlation coefficient (r) of 0.73. This significant correlation highlights the capability of DES/P to reflect the metrics of the well-established SUS, especially in the realm of digital health care.

When examining the individual subgroup scores within DES/P, we observed different levels of correlation with the overall SUS score. The set of questions under the simplicity category demonstrated the strongest correlation (r=0.89), a predictable outcome given that the simplicity category in DES/P is closely alignment with SUS questions, capturing fundamental UX principles.

The connectivity and value segments in DES/P exhibited moderate correlations with the SUS score, with correlation coefficients of 0.51 and 0.47, respectively. This moderate correlation suggests that these categories delve into aspects that are more tailored to health care and patient-focused UX, which are less emphasized in the SUS model.

On a more granular level, DES/P questions focusing on navigation, ease-of-use, language, and completeness were highly correlated with the aggregate SUS score (r=0.75-0.84). Conversely, questions pertaining to benefits, empathy, trust, social proof, and omnichannel demonstrated lower correlations with the overall SUS score (r= 0.24-0.36). This variance underscores the distinct facets of patient-centric experiences captured by DES/P, which are not as central in the general UX principles of SUS.

Furthermore, within each DES/P category, there was a noticeable correlation among the questions themselves, with intragroup correlation coefficients ranging from 0.55 to 0.62. All correlations mentioned in our analysis were statistically significant, meeting or surpassing the 95% confidence threshold.

In addition, within each DES/P category, individual question scores were found to be correlated with one another, with intragroup correlations varying between 0.55 and 0.62. All reported correlations in our study were significant at or beyond the 95% confidence level.¹⁷

These results not only confirm the robustness of the DES/P framework but also demonstrate its congruence and differences when compared with the SUS. The pronounced correlation, especially in the simplicity category, validates DES/P as a tool capable of encapsulating universal UX principles pertinent to patient experiences. The moderate correlations observed in other categories emphasize facets specifically designed for health care, offering detailed perspectives into the patient-focused UX. In addition, the diverse levels of correlation among individual questions underscore the unique and specialized characteristics of patient experiences in the digital health care context.

What Are the Uses for DES/P?

The DES/P framework allows healthcare UX practitioners to objectively measure patient centricity and effectiveness of health care websites, applications, or portals. In other words, it helps healthcare organizations to fully understand how well patients can interact with various digital assets and how satisfied their needs are by these interactions.

Digital Experience Scale for Patients can also be used to measure patient experience across the industry, before and after a redesign, for example. It can also be used to make a strong business case for digital improvements, showing data for what is and is not working for patients, and the return on investment of UX improvements.

Conclusion

Improving patient-oriented and caregiver-oriented digital products holds tremendous potential to improve health care outcomes. By embracing a patient-centric design approach that addresses the themes of value, simplicity, and connectivity, health care organizations can unlock the true value of these offerings.

Improving patient UX in health care goes far beyond convenience. Ensuring that digital health interfaces are accessible to everyone regardless of their age, health status, and digital and health literacy, promotes health equity and inclusion and lowers health disparities between different populations.

In prioritizing the needs and preferences of patients, we can build digital experiences that empower patients, enhance adherence to therapy, and ultimately improve their overall health and well-being. Through collaborative efforts and a relentless commitment to patient-centric design, we can pave the way for a future where technology and patient experiences harmoniously coexist, revolutionizing health care for the better.

Potential Competing Interests

The author reports no competing interests.