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- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care: A Request for Input
Past Opportunities to Provide Input
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
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As Americans’ use of cell phones and the internet have increased rapidly, clinicians and researchers have realized that telehealth may help people better manage their health. Telehealth, which involves clinicians, allied staff, and patients using technology such as videoconferencing and text messages to make healthcare decisions and deliver care, can be especially effective in providing access to care for underserved populations.
Research has shown that telehealth can provide care to technologically literate communities with good access to the internet, but many groups at risk for health disparities haven’t been able to receive care using telehealth. For instance, roughly one-third percent of rural Americans lack access to high-speed internet, the Pew Research Center reports. PCORI-funded studies are examining whether there are methods of delivering telehealth to rural populations that can alleviate healthcare disparities.
Even within populations with wide use of mobile technologies, few telehealth approaches have been tailored to be culturally appropriate, which can create barriers for certain racial and ethnic minority populations.
With all this in mind, more than one-third of PCORI’s 70 telehealth studies aim to address health and healthcare disparities. We highlight three of these projects below.
Taking Aim at Hepatitis B’s Dangers among Asian Americans
Asian Americans and Pacific Islanders make up less than 5 percent of the US population, but they make up more than half of the nearly 1 million Americans with chronic hepatitis B virus infection. Left untreated, hepatitis B can cause serious liver problems, including cancer.
PCORI's Telehealth Focus
To determine how well telehealth works for different health conditions and populations, PCORI has awarded $258 million to fund 70 comparative effectiveness research studies related to telehealth, as of July 2018. These studies aim to help patients and those who care for them make better-informed decisions about the use of telehealth to prevent, diagnose, and treat conditions.
PCORI-funded projects are examining the use of telehealth to increase access to specialty care for patients with chronic skin disease, improve children’s access to mental health care, and complement in-person doctor’s visits for patients with Parkinson’s disease, among other projects. For more up-to-date information, see our fact sheet, Research Topic page, and a listing of some of our telehealth projects.
Patients who have chronic hepatitis B often feel fine even though they are at high risk for complications, so frequent testing for early signs of liver problems is crucial. A PCORI-funded study led by researchers at Temple University is examining a way to increase this population’s testing frequency using text messaging in combination with other services.
The study compares 500 patients with hepatitis B who receive usual care to 500 patients who receive patient-designed, culturally tailored text messages and work with a bilingual Asian-American patient navigator. The navigator guides the patient through hepatitis B screening, treatment, and management in a culturally tailored way. The patients are Asian American, live in Baltimore or New York City, and visit clinics that serve low-income neighborhoods.
Researchers expect that the group working with patient navigators and receiving text messages will seek testing more frequently. These patients, the researchers expect, will also build coping skills, gain social support, and reduce anxiety about the virus. The researchers hope to learn whether this intervention could be a guide for using telehealth to treat populations at risk for disparities across a spectrum of healthcare conditions.
Hearing Loss in Rural Alaska
Children in rural Alaska experience a disproportionate burden of treatable hearing loss, primarily because of chronic ear infections. By state law, all Alaskan schoolchildren receive hearing tests at school, but the screening process may miss some children with hearing loss; additionally, many children with hearing loss don’t receive follow-up care. A PCORI-funded study based at Norton Sound Health Corporation in Nome, Alaska, is examining ways to improve both of these problems using telehealth.
In the project, children in kindergarten through 12th grade in 15 low-income, rural communities in Northwest Alaska undergo screening for hearing loss at their schools. Research staff also screen children with a new cell-phone-based screen. Audiologists then perform a full hearing exam to test how accurate the school and cell-phone screens are.
More than one-third of PCORI’s 70 telehealth studies aim to address health and healthcare disparities.
Researchers then randomly divide the communities into two groups. In the first group, schools send parents whose children need further screening a letter asking them to bring the children to a clinic for more testing. In the second group, the school and clinic work together to schedule children who need further hearing screening for an immediate videoconference consultation with an audiologist at a village health clinic. The tests at the clinic, regardless of which group the study participants are in, use telemedicine, with a community health worker facilitating the test between the child and a remote audiologist.
The research team hopes to determine whether telemedicine speeds hearing-loss diagnoses, and whether the school-led intervention or parent-led intervention leads to earlier diagnoses and improves hearing and academic outcomes for children.
Mental Health Care for Rural Populations
In rural areas, not enough mental health clinicians are available to see all of the patients who need treatment. This leads to disparities in mental health outcomes. A University of Washington-based study is testing two telehealth strategies with 1,000 patients who aren’t receiving mental health care—500 with posttraumatic stress disorder (PTSD) and 500 with bipolar disorder—at 15 rural community health centers in Arkansas, Michigan, and Washington State. At these centers, about two-thirds of patients come from racial or ethnic minority groups, and most have incomes at or below the poverty level.
The study randomly assigns patients to one of two treatment approaches. Patients in both groups have a one-on-one videoconferencing session with a mental health doctor, who confirms a diagnosis and recommends a treatment plan. In one arm of the study, a care team—including a care manager at the health center, primary care doctor, and remote mental health doctor—work with patients to carry out treatment plans. The primary care doctors prescribe medicines. In the other arm of the study, patients also get videoconference sessions with the mental health doctor, but the primary care physician and on-site care coordinator are not closely involved in care.
The research team wants to know which treatment approach provides better mental health-related quality of life and which group of patients better follows treatment plans. The results may help rural community health centers decide how best to use telehealth to increase access to mental services to underserved patients with PTSD or bipolar disorder.
A Growing Reservoir of Telehealth Studies
While we wait for more evidence about whether and to what extent telehealth can help alleviate disparities, there are additional questions about how well it might work for specific populations through different interventions. With our funding of studies on telehealth strategies and applications, we will provide evidence to help answer those questions.
July 31, 2018, 7:40 PM
Comment by Paula Winkler,
These are very interesting projects that I look forward to hearing outcomes. What about the workforce that is handling these scenarios? Is there curriculum to train on best practices and what about chronic disease management with CHWs?
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