| Literature DB >> 32706709 |
Alejandra Casillas1, Anupama Gunshekar Cemballi2, Anshu Abhat3, Miya Lemberg2, Jennifer D Portz4, Shobha Sadasivaiah5, Neda Ratanawongsa2, Wagahta Semere2, Arleen Brown1, Courtney Rees Lyles2.
Abstract
BACKGROUND: Patients within safety-net settings are less likely to access health information on patient portals, despite expressed interest. Family and friends are important resources to assist these patients (ie, Medicaid recipients, older patients, patients with limited English proficiency) in navigating health systems, and provider support of the use of patient portals among these groups may also facilitate caregivers' use of their patients' portal.Entities:
Keywords: caregivers; digital divide; mobile phone; patient portal; vulnerable populations
Mesh:
Year: 2020 PMID: 32706709 PMCID: PMC7400036 DOI: 10.2196/18466
Source DB: PubMed Journal: J Med Internet Res ISSN: 1438-8871 Impact factor: 5.428
Safety-net provider participants’ characteristics.
| Clinical specialty | Safety-net role |
| Geriatrics | Physician, Medical Director |
| Geriatrics | Physician, Department Chief |
| Geriatrics | Physician, Director of Primary Care |
| Geriatrics | Physician, Outpatient Care Medical Director |
| Internal medicine | Physician, Clinical Lead |
| Internal medicine | Physician, Clinical Lead |
| Internal medicine | Physician, Health Care Executive |
| Internal medicine | Physician, Medical Director |
| Internal medicine | Physician, Medical Director |
| Internal medicine | Physician, Resident Preceptor |
| Internal medicine | Physician, Director of Outpatient Care |
| Internal medicine | Physician, Director of Primary Care Quality |
| Family medicine | Physician, Assistant Medical Director |
| Family medicine | Physician, Health Care Executive |
| Family medicine | Physician, Health Care Executive |
| Occupational therapy | Speech Pathologist, Health Care Executive |
Themes and subthemes on positive aspects of portal use with exemplar quotes.
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“I record it in my notes...at the first part of workflow...registration staff is collecting information about emergency contacts and alternate contacts...depending on what the patient or their caregiver says at registration, there might be something entered into the chart in that capacity.” “Sometimes, because usually it would be because the note would say, ‘Accompanied by daughter’ or ‘Discussed with daughter’, ‘Discussed with son’, ‘Discussed with caregiver’, ‘Discussed with IHSS [in home support services] worker,’ but not all the time.” “I don’t think uniformly. You’ll see it (caregiver information) in the body of the note, not always in the, social history section. And to tell you the truth, our EHR doesn’t have a good section on caregiver information...in terms of like whose number should you call? Do they have a caregiver they can call?” “[I’m] trying my best to collect the information and actually put it in the EHR so I know who they are...oftentimes, after I did that, [with] a group of patients, I always follow up if they live in supportive housing, or they have a case manager and so that’s external, nonfamily caregiver visit their office, followed up by email to whoever their support people are in the community to make sure that they know what the next steps are.” | |
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| Portal as a tool to assist caregivers with standard health care tasks (n=32) |
“I think caregivers using the patient portal could co-manage patient’s health, could be a huge asset to the caregiver and the provider... it’s not infrequent that the patient or the patient and the caregiver show up to appointments saying they ran out of their meds two months ago.” “Usually there’s more than one caregiver, where there’s a network and may have varied involvement. Like with my sisters and me, we have this constant flow of information, and having a way to put it all in one place to share easily is really important.” “...they’re just rolling out this new scheduling tool that will allow internal schedulers to be able to search for ways of grouping their appointments. So, the [OT, PT,] speech could all happen on the same day. If that tool could be made available to a caregiver so they can say ‘Okay, I wanted to have doctor’s appointments at this and this and this all on the same day’, I think that would be really powerful.” |
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| Portal as a tool to directly support the caregiver (n=7) |
“Empowering the caretakers to be able to use technology decreases their stress level.” “I think respite is also a big thing, caregiver relief and caregiver fatigue is a big problem sometimes, and having access to joint behavioral health services, or like couple counseling, or parent-child counseling in the study of chronic disease, I think it’s something super underutilized. That could probably help a lot with the challenges.” “I know there’s a lot of groups that are working on this or have published. I know at UCLA in geriatrics, they’ve done an Internet caregiving education course, and I know at Stanford, they put together Caregiving Ed. And at the VA, there’s several well published evidence-based caregiving teaching programs, but our patients certainly don’t have—or a lot of my patients don’t have access to that.” “I would be really interested in the opportunity to do more training for caregivers. I think that’s a great business opportunity, because so many caregivers have no idea what they’re doing and would be happy to get trained. You can imagine the range of trainings, but our organization or your organization, or you know some private—any big county—I could imagine offered some form of training for caregivers. I think having a portal will help hopefully and I think having processing in place to clarify what can be shared and what can’t be shared with caregivers, if it’s documented well.” |
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| Expanding portal functionality for caregiver use (n=18) |
“For caregivers who have a homebound elder, to be able to, you know, put on their FaceTime and for me to see what’s going on that would be amazing.” “...allowing patients to search and contribute to the medical notes before the visit, the medical records, typing in their symptoms. I think there should be conversations of getting caregivers involved in the patient’s care.” “If people just keep track of hey, someone’s calling not for themselves and just kept a running list, and then you do active outreach for anyone who is calling not for themselves.” |
Themes and subthemes on challenges to portal use with exemplar quotes.
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| Portal triad relationship (n=7) |
“The one downfall of caregivers having access is, is there any loss in translation or, if some plan is made on the portal, is that being followed through by the caregiver?” “One of the few that I communicate with is a husband and wife patient and this is a challenge...because then I have to document it in her, in his chart, where her messages get documented in his chart... and it’s worked because she has direct access to me and then he has direct access too, but she uses her account to...manage his health... And, yeah, I thought it would be nice if she could switch back and forth.” “If it’s something I can communicate to them immediately, then I send a message through the portal. Then, if there’s anything else that I might need to communicate with them, and I don’t need to call them, then I’ll do it through the portal. A lot of it is dependent on, ‘What can I communicate briefly in writing without creating [confusion] on their part or some more questions than answers?’” “I’m observing body language, so on rare occasions, if I’m concerned that perhaps the person feels like they can’t ask the other person to leave the room, then I go ahead and...When I’m gonna be asking something sensitive in the interview around social history or any history, I’ll actually ask the other person to step out of the room and wait in the waiting room and I just normalize that and say, ‘You know, I always do this to respect confidentiality’. That’s in person, so what do you do when tech comes in?” “If you build a system that is specifically asking, ‘Is this a proxy person?’ and kind of asking for that designation right up front and putting it in black and white, you do run the risk of—of having more scrutiny and I think it’s appropriate.” “I think that what we’re doing right now is we are just in the infancy of using our portal for patient communication.” “And when I get an odd message or a little crazy message, you know, or someone requesting whatever, I screenshot it and I send it to the site managers and I tell them to call them on the phone to get more information.” | |
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| Control of shared access (n=13) |
“When we see some research that suggests that some patients don’t want the entire portal revealed to their loved ones, but maybe part of it...and so patient privacy is—is a big concern. A husband may not want his wife to know that he was a prior IV-drug user from a different life.” “I have mixed views because we try the different role for parents from the portal once the kid at 13. And sometimes they want to come for birth control and they didn’t want their moms to know. So, I don’t want the moms to see the kid’s the portal.” “I mean just mostly with like the proxy access...they’ve just had a lot of questions and concerns around, ‘When is it okay? Do we need a legal document that states, “Yes, ma’am. They are my legal healthcare proxy,”’ or if they’re, on mild dementia, but they say, ‘No, let her do it’, is that sufficient?” | |
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| General portal security and technology concerns (n=11) |
“I do have some HIV patients who won’t join because they’re just afraid of the internet, in general...I think it’s a broader concern beyond just their HIV status but just that they don’t think it’s safe to have their information in the cloud basically, because it could be stolen or, or utilized in a way that’s negative.” “How do you build a portal that respects patient privacy? You also wonder if adding a caregiver affects the security of the health data.” | |
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“The number of people [caregivers] who don’t have access to either a smartphone or the internet...I think is just the reflection of the income level and kind of resource constraints of our patient population.” “I’m guessing that there would be times when people are concerned by the results that look abnormal or don’t understand them because no one explained it to them....” “A lot of our patients just don’t really use like electronic technology and they don’t speak English, or they don’t have an internet connection or a computer.” | ||