The presence of a deep digital health divide within the older population was evident in both the community sample and focus groups. This divide was associated with age, amount of formal education, income, and ethnic group membership. Those individuals who were older, less educated, poorer, and/or members of an ethnic minority group (African American, Afro-Caribbean, or Hispanic American) were up to five times less likely to have access to digital health information than were those who were younger and more highly educated, had a higher income, or were European Americans. These results are similar to those of Swed and colleagues, Levine and colleagues, and others who found low levels of access to digital health information in older, poorer, minority, and immigrant groups [13,14,15, 17].
The results of the focus group sessions shed some light on the effects of this disparity and highlight differences in response across the minority groups represented. Interest in obtaining Internet health-related information was highest in the African Americans, Afro-Caribbeans, and European Americans, moderate at best in the Hispanic American group. Ability to afford a device that allows Internet access differed greatly across groups and participants’ expressed preferences for provider-patient information or more independent searches, and involvement in decision-making also varied considerably. Almost none (2 of 28) of the low-income African American and Afro-Caribbean participants in the first focus group had an Internet-enabled electronic device or convenient Internet access to digital health information. They expressed frustration with their lack of access and appreciation for the printed materials and telephone calls they received. The Hispanic American participants in the second focus group focused more on receiving information from their medical providers and the power of a positive attitude with mention of drug inserts, an occasional Internet search, support groups, and conversations with family and friends and for one, talking with God. In contrast, the European American group was Internet savvy, doing “homework” about their health concerns online, but also talking with friends, family, in support groups, and looking to their providers to relate the information to their personal situations.
Culture shapes individuals’ expectations of care and of the patient-provider relationship . The differences in concerns and preferences voiced in the focus groups suggest caution that we do not overgeneralize across minority groups. It has been suggested that Hispanic patients on the whole prefer a more traditional relationship with their providers which was evident in the focus group results . This may be related to valuing personal relationships with providers and a concern that asking too many questions may jeopardize the relationship . There is also evidence that a small but important segment of the frail older adult population is more likely than are younger adults to delegate health-related decisions to a trusted provider, potentially reducing their interest in seeking out digital health-related information . Challenges associated with accessing and utilizing health-related information emerged from the focus group discussions: the complexity of sorting out information on multiple drugs, relating general health information to one’s own situation, the uncertain accuracy of information on various websites, and the difficulty of raising questions with paternalistic providers who engage primarily in one-way provider to patient communication.
The barriers identified here may be under-appreciated by developers of health-related information, patient decision aids, and the many apps being developed for self-monitoring treatment of depression, exercise promotion, medication self-management, diabetes self-management, and the like. These can be especially helpful for older adults, a high proportion of whom have chronic conditions and could benefit from these new digital health applications if they can access and use them. At present, digital health technology development is outpacing parallel efforts to conquer the digital health divide.
Addressing this digital health divide in the older population requires attention at several levels. At the policy level, national connectivity plans are needed, and greater effort to provide universal Internet access needs to be made . Municipal broadband networks can achieve this at the local level . Eventually Internet service needs to be redefined as a necessity, not a luxury, a necessary utility like electricity and water or to become a free service supported by advertisements as are broadcast radio and television . Not only does it need to be affordable but also adequate for the job. Some free Internet services have been plagued with slow speed, weak indoor signals, and high “installation” fees to subscribers as well as service cancelation fees, leaving many of those who cannot afford the cost of Internet service still disconnected and disenfranchised [30, 31]. The effects of the COVID-19 pandemic highlighted how essential access to the Internet and to digital health information is in all communities [30, 32]. New approaches were tested during school shutdowns when students and teachers could only connect virtually. Inexpensive laptops or tablets, mobile hot spots, and wireless gateways were made available to students without access, enabling full participation in their online classes . Older adults who qualify for federal nutrition programs or Medicaid, live in public housing, or are veterans may qualify for programs providing low-cost computers and Internet access . Free access at public sites such as community centers, libraries, and community rooms of senior living facilities can also be used to introduce people to Internet use and to provide training for those who are not computer literate. The training programs are especially helpful to those individuals who lack experience and/or are intimidated by the Internet and need education and support.
Healthcare providers can support their patients’ transition from passive to active participants in their care including the use of digital health information. There are also indications in the comments of focus group participants that digital health technologies need to be more customized and culturally sensitive as well as available in the patients’ primary language than they are currently. For the present, there is still an important role for print-based information as well .
The strengths of this study lie in the diversity of the sample, the breadth of the community survey questions, and the added depth of understanding gained from the focus group discussions. Limitations were the use of a convenience sample that may not be representative of the broader populations of interest and possible reluctance of focus group participants to raise some issues within a group. For example, barriers to access of digital health information such as cost or lower education, which were evident from the quantitative data, were not raised in the focus groups. These more personal concerns might have been voiced in individual interviews. Too, the differences across the ethnic groups clearly interact with, but are not entirely due to, the differences in income across the groups. Disentangling the complex factors that underlie these disparities is a challenging task .
Several questions remain about the digital health divide in the older population. While it is clear that there is a cultural effect, we need a better understanding of several additional issues: (1) perceptions of the use of technology and specifically health-related technologies, (2) expectations regarding the role of the older adult as an active participant in one’s healthcare, (3) means for raising the levels of basic computer and health literacy which are needed to use digital health technology comfortably and effectively, and (4) individual preferences for the traditional patient-provider role vs being an activated, involved patient with a responsive provider. The individual factors that many affect readiness to use digital health information, i.e., technological readiness, were not fully addressed in this study and should be further explored . A final challenge to researchers who are developing and testing new uses of digital health technology is the call from these participants for health information available in print, telephonically, and in other non-digital formats as well as digitally until such time as access to digital health information is universal.