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.1Madanian S. Nakarada-Kordic I. Reay S. Chetty T. Patients’ perspectives on digital health tools.PEC Innov. 2023; 2100171https://doi.org/10.1016/j.pecinn.2023.100171Crossref Scopus (2) Google Scholar, 2Leonardsen A.-C.L. Hardeland C. Helgesen A.K. Grøndahl V.A. Patient experiences with technology enabled care across healthcare settings—a systematic review.BMC Health Serv Res. 2020; 20: 779https://doi.org/10.1186/s12913-020-05633-4Crossref PubMed Scopus (53) Google Scholar, 3Risling T. Martinez J. Young J. Thorp-Froslie N. Evaluating patient empowerment in association with eHealth technology: scoping review.J Med Internet Res. 2017; 19: e329https://doi.org/10.2196/jmir.7809Crossref PubMed Scopus (124) Google Scholar, 4Akbar A. Iqbal A. Gaziano D. et al.A cross-sectional survey on telemedicine use for doctor-patient communication.Cureus. 2020; 12e10402https://doi.org/10.7759/cureus.10402Crossref Google Scholar, 5Sheridan N.F. Kenealy T.W. Fitzgerald A.C. et al.How does it feel to be a problem? Patients’ experiences of self-management support in New Zealand and Canada.Health Expect. 2019; 22: 34-45https://doi.org/10.1111/hex.12823Crossref Scopus (8) Google Scholar 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.6Knickman J.R. Elbel B. Jonas and Kovner’s Health Care Delivery in the United States.13th ed. Springer Publishing, 2023Crossref Scopus (0) Google Scholar Patients expect health care brands to provide the same level of seamless, user-centered interaction, but they rarely receive it.7Why don’t patients love pharma apps? Because most are just mediocre, advocacy network says. Fierce Pharma.https://www.fiercepharma.com/marketing/patients-lackluster-interest-pharma-apps-tied-to-low-awareness-and-value-says-patientDate accessed: October 11, 2023Google Scholar, 8Gilbert R.M. Reimagining digital healthcare with a patient-centric approach: the role of user experience (UX) research.Front Digit Health. 2022; 4: 899976https://doi.org/10.3389/fdgth.2022.899976Crossref Scopus (6) Google Scholar, 9Birnbaum F. Lewis D.M. Rosen R.K. Ranney M.L. Patient engagement and the design of digital health.Acad Emerg Med. 2015; 22: 754-756https://doi.org/10.1111/acem.12692Crossref Scopus (148) Google Scholar 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.2Leonardsen A.-C.L. Hardeland C. Helgesen A.K. Grøndahl V.A. Patient experiences with technology enabled care across healthcare settings—a systematic review.BMC Health Serv Res. 2020; 20: 779https://doi.org/10.1186/s12913-020-05633-4Crossref PubMed Scopus (53) Google Scholar,9Birnbaum F. Lewis D.M. Rosen R.K. Ranney M.L. Patient engagement and the design of digital health.Acad Emerg Med. 2015; 22: 754-756https://doi.org/10.1111/acem.12692Crossref Scopus (148) Google Scholar, 10Marks R. Allegrante J.P. Lorig K. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: implications for health education practice (part I).Health Promot Pract. 2005; 6: 37-43https://doi.org/10.1177/1524839904266790Crossref PubMed Scopus (260) Google Scholar, 11Hibbard J.H. Mahoney E.R. Stock R. Tusler M. Do increases in patient activation result in improved self-management behaviors?.Health Serv Res. 2007; 42: 1443-1463https://doi.org/10.1111/j.1475-6773.2006.00669.xCrossref PubMed Scopus (642) Google Scholar 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.12System Usability Scale (SUS)Usability.gov.https://www.usability.gov/how-to-and-tools/methods/system-usability-scale.htmlDate accessed: October 11, 2023Google Scholar 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.13What is net promoter? Net promoter network.https://www.netpromoter.comDate accessed: October 11, 2023Google Scholar 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).14DES/PDigital Experience Scale for Patients. Intechnic.https://www.intechnic.com/despDate accessed: October 11, 2023Google Scholar 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.15Intechnic. White PaperMapping digital patient experience preferences and expectations.https://www.intechnic.com/blog/mapping-digital-patient-experience-preferences-and-expectationsDate: 2024Date accessed: February 19, 2024Google Scholar 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.15Intechnic. White PaperMapping digital patient experience preferences and expectations.https://www.intechnic.com/blog/mapping-digital-patient-experience-preferences-and-expectationsDate: 2024Date accessed: February 19, 2024Google Scholar 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.15Intechnic. White PaperMapping digital patient experience preferences and expectations.https://www.intechnic.com/blog/mapping-digital-patient-experience-preferences-and-expectationsDate: 2024Date accessed: February 19, 2024Google Scholar 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. 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? 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? 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? 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.12System Usability Scale (SUS)Usability.gov.https://www.usability.gov/how-to-and-tools/methods/system-usability-scale.htmlDate accessed: October 11, 2023Google Scholar 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 copy14DES/PDigital Experience Scale for Patients. Intechnic.https://www.intechnic.com/despDate accessed: October 11, 2023Google Scholar 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.15Intechnic. White PaperMapping digital patient experience preferences and expectations.https://www.intechnic.com/blog/mapping-digital-patient-experience-preferences-and-expectationsDate: 2024Date accessed: February 19, 2024Google Scholar 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.16Why you only need to test with 5 users. NN/g Nielsen Norman Group.https://www.nngroup.com/articles/why-you-only-need-to-test-with-5-usersDate accessed: October 11, 2023Google Scholar 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.16Why you only need to test with 5 users. NN/g Nielsen Norman Group.https://www.nngroup.com/articles/why-you-only-need-to-test-with-5-usersDate accessed: October 11, 2023Google Scholar 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. 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).17Intechnic. White PaperCorrelating the digital experience scale for patients with industry standards.https://www.intechnic.com/blog/correlating-the-digital-experience-scale-for-patients-with-industry-standardsDate: 2024Date accessed: February 19, 2024Google Scholar 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.17Intechnic. White PaperCorrelating the digital experience scale for patients with industry standards.https://www.intechnic.com/blog/correlating-the-digital-experience-scale-for-patients-with-industry-standardsDate: 2024Date accessed: February 19, 2024Google Scholar 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. 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. 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.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.