Virtual village can empower vulnerable groups of people
UC Riverside-led study focused on older people living with HIV during the pandemic
Peer-Reviewed PublicationRIVERSIDE, Calif. -- New psychosocial stressors and widespread lifestyle changes resulted from to the COVID-19 pandemic, contributing to depression, isolation, and anxiety. Many studies have explored the impact of the pandemic on the general population’s mental health. But what about the impact on increased isolation among the growing number of older people living with HIV (OPLH)?
To explore this question, a team led by scientists at the University of California, Riverside, designed a virtual village — an online space facilitating positive connections among people — to provide health, community-based, and personal resources for OPLH who are at least 50 years old. The village provides a safe space for participants to create support groups and reduce the negative effects of social isolation.
“We found the use of a virtual village can be a viable method of connecting vulnerable groups to services and to each other, and provides guidance on how to expand in future research with similar concepts,” said Jasmine Lucero López, the first author of the paper that appears in the Journal of the International AIDS Society. “We identified three key lessons on how to enhance future studies.”
The three lessons are:
- It is important to be mindful that some older populations may experience significant difficulty using newer technology.
- Interactive social events are frequently attended and requested by participants.
- Living with HIV is not enough to bond individuals.
The study had 24 participants from the Coachella Valley area, Los Angeles metro area, and Tampa Bay region. The researchers were invited last month to present the results of their study to the National Academy of Medicine.
“COVID-19 has resulted in quickly evolving studies that address unique issues, yet few focus on supporting individuals who are aging in place with HIV,” said López, an undergraduate honors student in the Department of Psychology and lead of the HIV and aging research team. “Our study reports on the pilot phase of a virtual village and provides insight into the needs of the people aging with HIV during the global pandemic.”
The researchers embedded six interventions — social mixers, a buddy system, expert presentations, resources, guided discussions, and mindful meditation — into the virtual village during the pilot period. They found social mixers, hosted biweekly, were the most attended of the interventions.
During the social mixers, many participants told the researchers that they looked forward to these social events because they promoted the formation of interpersonal relationships. Some even reported that these types of interventions enhanced a sense of community.
“Whether it was through our buddy system or Bingo nights, these interventions made it easier for participants to empower one another,” López said. “Our proposed social interventions not only assisted with the creation of a virtual village, but also facilitated friendships that extended into in-person meetings.
Brandon Brown, who advises López, explained that older people living with HIV are at a high risk of facing dangerous symptoms of COVID-19, which are attributed to age factors and being immunocompromised.
“This population has adhered to more strict isolative guidelines,” said Brown, a professor of social medicine, population, and public health in the School of Medicine. “This social isolation has negatively impacted psychological well-being, which directly influences the overall health of an individual. Mental health comorbidities and AIDS survivor syndrome further intensify the detrimental impact of isolation during a pandemic. For these reasons, it is essential to explore new methods to connect vulnerable populations in a manner that prioritizes the improvement of quality of life. We hope our study leads to an expansion of networks and enables this community to connect on a more widespread scale.”
According to Brown, virtual villages have gradually gained popularity, especially during the past decade with increased accessibility to the internet through mobile and other devices.
“We chose the topic of HIV for this particular virtual village project due to research and advocacy focus of our team, but our process of co-creating a virtual community can be replicated for any health or social topic,” he said. “As long as there is a common identity and evidence of community cohesion, we believe a virtual village can be useful to bring people together and supplement or even facilitate in-person activities.”
Brown and López were joined in the study by researchers at UC Merced; UC San Diego; University of South Florida; Northeastern University, Mass.; and HIV + Aging Research Project – Palm Springs, Calif.
The research was supported in part by a grant from Merck Sharp & Dohme Corp and the National Institutes of Health.
The research paper is titled “Lessons learned in co-creating a Virtual Village for people ageing with HIV.”
The University of California, Riverside is a doctoral research university, a living laboratory for groundbreaking exploration of issues critical to Inland Southern California, the state and communities around the world. Reflecting California's diverse culture, UCR's enrollment is more than 26,000 students. The campus opened a medical school in 2013 and has reached the heart of the Coachella Valley by way of the UCR Palm Desert Center. The campus has an annual impact of more than $2.7 billion on the U.S. economy. To learn more, visit www.ucr.edu.
JOURNAL
Journal of the International AIDS Society
METHOD OF RESEARCH
Survey
SUBJECT OF RESEARCH
People
ARTICLE TITLE
Lessons learned in co-creating a Virtual Village for people ageing with HIV.
ARTICLE PUBLICATION DATE
23-May-2023
Logging on for health: More older adults use patient portals, but access and attitudes vary widely
Three-quarters of people age 50-80 use at least one portal, but use and confidence are lower in those with lower incomes or lower levels of physical or mental health
Reports and ProceedingsFar more older adults these days log on to secure websites or apps to connect with their health information or have a virtual health care appointment, compared with five years ago, a new poll shows.
Overall, 78% of people aged 50 to 80 have used at least one patient portal, up from 51% in a poll taken five years ago, according to findings from the University of Michigan National Poll on Healthy Aging. Of those with portal access, 55% had used it in the past month, and 49% have accounts on more than one portal.
But the poll also reveals major disparities, with some groups of older adults less likely to use patient portals, or more likely to have concerns about them. Older adults with annual household incomes below $60,000, and those who are Black or Hispanic, have lower rates of portal use, and were less likely to say they’re comfortable using a portal, than respondents who are higher-income or non-Hispanic white.
There were also differences among older adults who don’t use portals, or haven’t used one in three or more years. Those who say they’re in fair or poor health physically or mentally were much more likely to say they’re not confident about their ability to log in and navigate a portal than those with better physical or mental health.
Even among older adults who use online portals, the poll shows many still prefer phone calls for some tasks like scheduling appointments or asking a medical question. Portal users in general said they prefer the portal to the phone when it comes to tasks such as getting test results and requesting refills of their prescriptions.
The poll is based at the U-M Institute for Healthcare Policy and Innovation and supported by AARP and Michigan Medicine, the University of Michigan’s academic medical center.
The jump in portal use between polls done in 2018 and 2023 likely happened in part due to the increase in use of telehealth visits, says Denise Anthony, Ph.D., the U-M School of Public Health researcher who worked on the poll.
The pandemic spurred many health systems, physician groups and hospitals to support video visits within their secure websites and apps.
“This change makes access to secure portals even more important for older adults who want to see their doctors and other health care providers virtually. It also makes the disparities we found in our poll even more troubling,” says Anthony, who chairs the Department of Health Management and Policy and studies use of telehealth and patient portals. "Improving the functionality and accessibility of portal systems, as well as providing more outreach and training to help patients understand and use portal systems, will be crucial to improving equity."
Many portals allow patients who have created their own accounts to also grant a loved one access to some or all of their information, so they can help manage their health care. The new poll shows that 49% of portal users have done so, up from 43% in 2018. Of all portal users, 40% have given access to a spouse or partner, with 48% of men doing so compared with 32% of women.
“A growing body of evidence shows that patients who use portals to access their information are more likely to take an active role in their care and stick to the treatment plan their physicians and other providers recommend, which we know is likely to lead to better outcomes,” says poll director Jeffrey Kullgren, M.D., M.P.H., M.S., an associate professor of internal medicine at Michigan Medicine and physician and researcher at the VA Ann Arbor Healthcare System.
“Health care organizations that offer portals, and providers working in those organizations, should make an effort to engage and support patients who have not yet activated a portal account, and to offer training to increase confidence and encourage the sharing of access with trusted loved ones,” he says. “This is especially important for patients who have complex health needs or multiple conditions.”
He notes that 27% of the poll respondents who have used a patient portal in the last year expressed an interest in more training. The percentage was higher among respondents who haven’t used a patient portal recently, and those who are Black, Hispanic or have incomes below $60,000.
“Research shows that while more older Americans are embracing technology, nearly 22 million seniors still do not have wireline broadband access at home, limiting their access to essential digital health care services like patient portals,” said Indira Venkat, AARP Senior Vice President of Research. “Closing the digital divide among older adults is critical to improving their wellbeing, especially for vulnerable communities and individuals.”
Michigan Medicine launched its portal, MyUofMhealth.org, in 2012. Like many health systems, it has continued to add online functions, from rapid test result access and paperless billing, to self-scheduling some types of appointments and having asynchronous chats with providers for urgent matters. Today, 20% of all outpatient visits with University of Michigan Health providers take place via video connections hosted in the portal.
The poll report is based on findings from a nationally representative survey conducted by NORC at the University of Chicago for IHPI and administered online and via phone in January 2023 among 2,563 adults aged 50 to 80. The sample was subsequently weighted to reflect the U.S. population. For the previous patient portal poll, a different sample of older adults was asked about patient portal use, but both samples were weighted to reflect the population of U.S. adults aged 50 to 80.
Read past National Poll on Healthy Aging reports and about the poll methodology.