Providing Client Portal Access to Caregivers: Is It Necessary?
Written by Caitlin Feehan
Nonprofit and social service organizations often provide a wide range of services to a wide range of people, each with their own unique needs and abilities. While many individuals who receive support from these organizations are lucky enough to be able to manage their health care and information independently, others require or benefit from having caregivers who support them in their treatment.
These caregivers, also known as care partners or health supporters, are often friends or family members of care recipients, and their level of involvement can vary widely based on factors like the patient’s age and the type and severity of their condition. Regardless of the level of responsibility or autonomy their care partners have, it’s important to give every client the option to share their personal information with the people who are part of their health care journey.
Keep reading to learn more about health supporters, the roles they play in their loved ones’ care, and the importance of giving them shared digital access to essential health information through platforms like client portals.
What is a caregiver or care partner?
Let’s talk a little more about who these individuals are and what they’re all about.
A 2019 report from the Mayo Clinic Kern Center for the Science of Health Care Delivery defines caregivers as “unpaid family members or friends who provide support and care to a loved one with a chronic health condition”. As noted earlier, caregiver responsibilities can vary widely depending on the situation, but often include a combination of the following tasks:
- Accessing the patient’s medical history, treatment notes, and other protected health information (PHI) online
- Scheduling and attending appointments
- Communicating with service providers
- Completing pre- and post-session documentation
- Overseeing finances and insurance claims
- Managing medication
- Providing emotional support
- Advocating on behalf of their loved one
Many of these responsibilities are ongoing and require a high level of engagement from caregivers. Just under half of those surveyed (41%) reported spending 15 hours or more providing care every week, including one-in-four (22%) who reported spending over 35 hours per week providing care. When you consider that nearly one-in-five individuals in the U.S. (18%) are caregivers who make health care decisions for someone with a medical or behavioral condition or disability, it becomes clear that this group of people plays a critical role in the health care system and makes up a significant portion of America’s care providers.
Who do they help?
Seven percent of individuals surveyed as part of the study referenced above indicated that they make health care decisions for a child with a medical or behavioral condition or disability, while 5% do so for a parent with a medical or behavioral condition or disability. About 3% of individuals surveyed indicated that they provide care or make health-related decisions for more than one individual with a health or behavioral condition or disability. See the table below for the full breakdown.
Why do they need digital access to their loved ones’ information?
If you take a close look at the data above, you’ll notice that the two groups of people who are most often supported by a care partner are on opposite ends of the age spectrum: children and seniors. Children, of course, do not have the knowledge or experience required to effectively navigate their health information, digitally or otherwise, and seniors are often hesitant to make use of or give others access to their health information online for a number of reasons.
A poll of 2,013 adults aged 50 to 80 conducted by the University of Michigan Institute for Healthcare Policy and Innovation showed that people over the age of 65 were more likely than their younger counterparts (those aged 50 to 64) to say that they don’t like using the computer to communicate about their health (62% vs. 46%) and are not comfortable with technology (47% vs. 30%). Since adults 65+ make up one of the two age groups most likely to have a caregiver and the group that is least comfortable accessing their health information digitally, it only makes sense that their caregiver would assume the task of monitoring and managing their health information through a client portal or other online platform.
It’s also essential for those who provide care to any individual with a severe disability that prevents them from being able to access or understand their health information to have full access to this information, both for routine care and in the event that they need to make a medical decision on their behalf.
Is giving someone else access to a patient’s information secure?
Under HIPAA, a patient’s personal representative (someone legally authorized to act on behalf of the patient—this could be a family member, close friend, home care aide, or another health supporter) has a right to access the patient’s PHI. This provision, in combination with the increased availability of digital tools, has made allowing caregivers to access patient information via a client portal more and more common in both social service and hospital settings, with 86% of community hospitals surveyed in 2017 reporting that they offered portal access to patients and their loved ones. Giving caregivers access to this information doesn’t automatically make it secure, though, and ensuring that client PHI is protected starts with your software.
A common mistake that social service organizations make when setting up caregiver access to client information via a client portal is providing the client and all their personal representatives or caregivers with a single login. This means that everyone who logs into the database or portal uses the same username and password, making it impossible to tell who is doing what within the system.
It’s important to make sure that your client portal and associated case management software provider allows you to give each personal representative or caregiver a unique, secure login so you can track the portal use of each individual, from messages sent to payments made. This not only increases the security of your client information but also helps to improve your organization’s reporting by capturing both patient-reported and caregiver-reported data directly within your case management system so that it’s easy to access and report on.
How do caregivers feel about using client portals?
Research shows that caregiver experiences with client portals are overwhelmingly positive.
In a study done by the Kaiser Permanente Division of Research in California, over 92% of care partners surveyed reported that using a client portal was more convenient and faster than other ways of participating in their loved ones’ health care, and 87% reported that it helped with organizing their health information. They also indicated that having access to a client portal reduced travel time and enabled them to be more involved in their family members’ care by communicating directly with their service providers and reviewing things like test results and medication history.
A study out of the Holland Bloorview Kids Rehabilitation Hospital in Toronto echoed these findings, with caregivers expressing the usefulness of using a client portal to access their child’s health records, reports, and appointments and their appreciation for the time this saved. They also felt that being able to read reports provided them with more detailed information and gave them a better understanding of technical terms used by providers, which allowed them to communicate with them more effectively.
Based on the available data, it seems like the only issue care partners have surrounding access to their loved ones’ health information is that they don’t have enough of it. A team at the University of Michigan, University of Pittsburgh, and VA Ann Arbor Healthcare System surveyed over 700 adults acting as health supporters for a family member or friend with a chronic illness and found that almost half of respondents (41%) felt like they were not getting the information they needed from care providers in order to understand their loved ones’ conditions and properly support them.
To ensure your clients and their health supporters never feel excluded or kept in the dark about their care, it’s important to understand what they need from your organization and make changes accordingly.
Tips for Service Providers
Now that you know what you need to do to provide the best possible experience for clients and their caregivers, it’s time to learn how to do it.
The first step to better understanding client needs is to ask them who is involved in their care. This question should be built into the screening process for new clients and asked retroactively for current clients who have not yet shared this information. You should train your staff to use this question to start a larger conversation about granting caregiver access to their information. Here are a few tips for what else to discuss during this conversation:
- Help clients understand that they can authorize their caregivers to have access to their health information online
- If the client is a child, has a severe disability, or is otherwise unable to consent to making such a decision, make sure their guardian or personal representative is involved in this conversation
- When applicable, ask clients if they want to grant someone digital access to their health information
- It’s important to note that HIPAA legislation typically allows a service provider to share a client’s health information with the friends and/or family members involved in their care unless the patient objects
- Explain the security of accessing health information online via platforms like client portals by emphasizing their compliance with standard privacy legislation like HIPAA and detailing any other security features they have in place
Remember to stress that client portal adoption doesn’t happen overnight and encourage both clients and their health supporters to provide feedback regularly. This will give your organization a better understanding of their needs and identify areas for improvement or clarification.
Finally, once they are given access to their loved ones’ health information via a client portal, your organization should provide caregivers with the training they require to use it effectively so they can provide the best possible support and make a real impact.
What have we learned?
Caregivers play an integral role in the management of their loved ones’ care, acting as interpreters of information, advocates for patient wellbeing, and contributors to treatment success and improved outcomes. Providing caregivers with digital access to patient health information allows them to be more involved with their care, improves patient-provider communication and collaboration, and creates a feeling of transparency and trust. It also enables caregivers to get a full understanding of their loved ones’ health and service history and empowers them to meaningfully contribute to care planning and information upkeep.
When done correctly, increasing shared access to patient health information through client portals benefits everyone involved in their health care journey, from care recipients themselves to their health supporters and providers, and can significantly improve their interactions with and feelings toward your organization.
Click to find out what a good client portal should offer your organization and the benefits of integrating it with your case management system to provide a secure and accurate single source of truth.