Increasing patient satisfaction is one of the top goals of value-based care, and patient data access can be a key way to reach that goal. However, both patients and providers are often unsure about patients being able to access their own health information.
Providers may be hesitant because they are uncertain whether or not a patient will fully understand what is being said in her clinician notes. Patients may not even understand their rights under the HIPAA Privacy and Security Rules, and may not ask to see their own information.
Educating patients and providers about patient data access, including what is allowed, will be key as healthcare works toward value-based care and its accompanying goal of nationwide interoperability.
Informed patients will help create a better healthcare environment by enhancing providers’ insight into necessary care. When patients and providers can communicate clearly with each other, value-based care will have a better chance of succeeding.
Laying the groundwork for patient data access
In April 2018, CMS renamed the EHR Incentive Programs to “Promoting Interoperability” in an effort to reflect the agency’s focus on improving health data exchange and patient data access.
Several associated initiatives, including MyHealthEData and Patients Over Paperwork, are designed to encourage providers to share information with patients as a way to engage individuals in their care.
“To avoid a payment penalty, providers will have to give patients electronic access to their health information,” CMS Administrator Seema Verma stressed.
This type of action on the part of the federal government is extremely encouraging, DirectTrust CEO Dr. David Kibbe said.
It is “a really healthy thing” that CMS is doing, he added. The transparency of pricing information and interoperability between providers and between providers and patients are key focal points, which will be essential moving toward value-based care.
“We need everybody in the healthcare system to be able to talk to everybody else without a lot of barriers being put in the way,” Kibbe continued.
“And we need to work on lowering those barriers together so that the system as a whole [can grow]. There are barriers that are going to always be there across organizational boundaries and barriers that are going to affect different health IT systems, but these are increasingly less problematic.”
He added that the biggest obstacle to patient data access is not technological: it’s cultural.
“Provider organizations in general have not yet come to the conclusion that it’s in everybody’s interest, including their own and the patient’s, to share more information with us,” Kibbe said.
CMS isn’t the only oversight organizations prompting providers to change this attitude. The Office of the National Coordinator (ONC) is also urging providers to prioritize patient data access as a way to reach patient engagement and value-based care goals.
“An informed patient is a better patient,” ONC Chief Clinical Officer Dr. Andrew Gettinger told EHRIntelligence.com. “An informed patient is part of the strategy for better healthcare, better compliance, better insight, and better understanding,”
Providers have been taking this notion on board in recent years by expanding patient portal access and working to promote the availability of online tools.
An informed patient is part of the strategy for better healthcare, better compliance, better insight, and better understanding.
A 2017 AHIMA survey found that 82 percent of patients reported that they logged into their provider’s patient portal at least once. Back in 2013, a similar survey revealed that fewer than 5 percent of patients had patient portal access.
Approximately one-third of patients said they view lab results in the patient portal, while 22 percent use it for requesting appointments, and 19 percent request medication refills.
According to an ONC data brief from April 2018, 80 percent of individuals who accessed their EHR data online found the information easy to understand and useful for their decision-making, indicating that healthcare organizations may be moving in the right direction by working to improve access to personal data.
The growing urgency for access to information
The success of value-based care will greatly depend on patients having access to their own health data.
“With any kind of interoperation, we’re looking for those opportunities to combine those strong clinical quality improvement cases with the accompanying argument that this makes sense in reducing costs or improving revenue situations,” Kibbe said.
Kibbe explained that everyone in his own family, himself included, has had trouble getting their own healthcare information from a hospital or medical practice. It should not be difficult to access your own data, he said, and individuals should know that they have the federal right under HIPAA to access that information.
“I have been waiting for providers to understand that patients who have their own health information then can turn to friends, family, or third parties, to help them understand that information,” he stated. “And then perhaps those patients can ask better questions, and are much more likely to be good patients, be easier to treat, and be more likely to get what they want.”
Providers must keep building momentum towards universal patient data access, which will in turn foster more meaningful engagement and smarter decision-making for patients.
“We are looking for a more proactive position on the part of providers under a value-based care environment, where the information and the data about me is something I’m invited to share and to help own,” Kibbe explained.
Patient data access and patient education have been tied to key value-based care measures such as readmissions. For example, better patient-provider communication and higher patient satisfaction scores can reduce the likelihood of rehospitalization by 39 percent, according to a 2017 study published in BMJ Quality & Safety.
The study also determined that patients who said their doctors always listened to them were 32 percent less likely to be readmitted to the hospital.
Furthermore, a 2017 Accenture survey showed that patients want convenient access to care, more engaging patient education, and avenues to manage their care on their own.
We are looking for a more proactive position on the part of providers under a value-based care environment, where the information and the data about me is something I’m invited to share and to help own.
Patient respondents added that 21 percent of providers have offered them access to connected health. Comparatively, 44 percent of patients said they’d use connected health at their provider’s encouragement.
Accenture also found that 44 percent of respondents would use virtual health if encouraged by their clinicians, and 31 percent if encouraged by their payers.
“Health information technology needs to be transformed, rather than thinking that health information technology is going to transform healthcare,” Kibbe said.
Does data access interfere with the patient-provider relationship?
The health record is primarily created for healthcare professionals, and not for patients, Gettinger explained. As a result, while the language and vocabulary is interpretable by other clinicians, it may not always be clear to patients.
For example, the term “morbidly obese” has a specific definition associated with it, Gettinger pointed out. It is based on an individual’s body mass index. However, many patients though might see that language and take offense, not recognizing that it is actually a recognized term to describe a specific condition.
“Some clinicians have expressed anxiety about that,” he observed. “In practice though, those concerns on the part of clinicians who are offering these documents are far greater than the actual experience.”
Another common concern is that some patients may look at lab results, perhaps earlier than their physicians do, and encounter data that they might not understand, such as a metric that is labeled “high” due to exceeding a generalized threshold.
“That is a concern that surfaces every time we talk about patients having access directly to their lab data,” Gettinger said. “But it’s very clear that that’s what patients want, and that satisfies patients.
“Today, there’s still a 72 hours to a three-day delay between getting a lab test and having a provider call to interpret the results,” he added.
“Most patients are frustrated by that, and want their data absolutely as soon as possible, regardless of whether their doctors and other caregivers may not have seen it yet. But imagine if your HIV result comes back – the preliminary result comes back positive. Or you get a pathology report that suggests cancer.”
That is why it is important for the person who orders a particular test to make it clear to the patient that she may be viewing results before her provider. If the patient has concerns, she should know that she can communicate with her provider and not just stay silent and become more worried.
Increased patient data access is the next step that needs to happen for healthcare, explained Dr. Jeremy Shelton, head of LUGPA’s Benchmarking Committee and UCLA David Geffen School of Medicine, Assistant Professor of Urology.
“There is resistance initially among many providers when they think that patients are going to read their clinical notes, typically born out of a concern that they think there may be challenges to accurate documentation, particularly in more challenging clinical situations,” Shelton explained. “In general I’m a big fan of [patient data access]; I think it makes care easier.”
However, the experience of most branches of medicine have been that it’s not that hard to document fairly, honestly, and respectfully at the same time. It can be a benefit to treatment adherence when patients can refer back to the physician note, as it can often be challenging for patients to remember all the details of a care plan discussed during the office visit.
“Patients may often not hear everything that’s said during a visit,” he stated. “They may not remember it, they may hear it incorrectly. If they have an opportunity to see the data, or see the notes themselves, it often helps them understand what their treatment plan is. In theory, this should lead to improvement in understanding and adherence to the care plan.
At Tennessee-based Methodist LeBonheur Healthcare, Chief Health Informatics Officer Cynthia Davis said primary care physicians have been concerned that a patient may view her information and not understand it, which could lead to an overabundance of phone calls.
However, research has not proven that to be the case.
“It actually says that their calls don’t go up,” she explained. “Part of that is education and experience and having our providers talk with one another about their experience.”
Transparency, education combine for meaningful patient data accessibility
Davis added that Methodist turned on OpenNotes for its faculty practices, and it was important to educate staff members and have them work together to understand how the process would actually work.
OpenNotes was founded on the principle of patient access to clinician notes and helps patients and family caregivers learn more about patient conditions and also improves patient safety.
OpenNotes represents an important cultural shift that reflects a broader movement towards transparency, Shelton explained.
A 2016 OpenNotes study found that offering patients a method to engage with physician notes and offer feedback on what they see can help improve care outcomes.
Within the population cared for by 41 physicians who had adopted OpenNotes, 6,225 patients used the tool over a test period from August 2014 to August 2015. Forty-four percent of participating patients looked at their notes while approximately 8 percent of patients used the feedback function.
Just under one-quarter of the patients who used the feedback function reported safety concerns, usually pertaining to medication errors or misreporting of pre-existing health conditions. Close to two-thirds of those reports were categorized as confirmed or possible concerns, while just over half of the reports led to actual changes to the medical record.
ONC’s April 2018 data brief also found that more patients are being offered access to their medical records, with 52 percent of patients being offered access in 2017. In 2014, only 42 percent had the opportunity.
Patients were also more likely to view their own medical record when prompted by a provider, the data brief showed. Of the patients who viewed their own records, 63 percent said they were encouraged to do so by their providers. Approximately four out of ten patients who viewed their medical records did so on their own accord.
Educating patients and providers about the parameters of HIPAA regulations can also help to clarify access options and reduce confusion over privacy myths.
HIPAA regulations grant individuals the right to ask to view and obtain a copy of their health records, receive records as paper or electronic copies, and even have records sent to another entity for treatment, billing, or operations purposes.
Individuals can request access to a “designated record set” which HHS defines as a “group of records maintained by or for a covered entity that is used, in whole or part, to make decisions about individuals, or that is a provider’s medical and billing records about individuals or a health plan’s enrollment, payment, claims adjudication, and case or medical management record systems.”
HHS also released clarification in 2016 on healthcare organizations being able to charge individuals a fee to access their health records. Covered entities and business associates can calculate their own fees, even for ePHI requests, as long as it is within the limits of HIPAA’s Privacy Rule.
The allowable costs are charges associated with copying PHI, such as paper supplies, toner, electronic media, labor for creating an explanation of health information, and postage. Allowable labor costs include photocopying paper records, scanning PHI into electronic format, converting the format of PHI, transferring data to a web-based portal, or mailing and emailing.
“Charging a flat fee not to exceed $6.50 per request is therefore an option available to entities that do not want to go through the process of calculating actual or average allowable costs for requests for electronic copies of PHI maintained electronically,” HHS explained.
Ever-evolving technology can help providers interact with their patients, and help fuel greater patient data access supported by HIPAA and other guidelines.
“We now have the technology through Direct exchange, Direct addresses, the DirectTrust Network, FHIR and applications and APIs to do much more to make it possible for patients and consumers to access their health information, and to do what they want to do with that information,” Kibbe said.
Along with OpenNotes or Direct messaging, healthcare organizations have more options through which to encourage patient data access each day.
We are really staged now to begin to serve information up that patients really want and that they will use to improve their health.
Methodist utilizes FHIR to access various EMRs for medication and allergy data. The provider feedback has been positive.
“We’ve heard things like, ‘Oh, I didn’t know that patient already had a lab result that I’m thinking about reviewing, or ordering again. Let me look at what they already have before I repeat and have a patient have to repeat something.’ To me that is the Holy Grail,” Davis said.
“That is better patient experience, that is safer patient care, that is better operational resource utilization.”
Identifying how patients process information, and how they access that information will be critical for achieving that goal, Davis explained. For example, calling patients on the phone might not be a good way to reach them. But in this day and age, patients of all ages tend to have a mobile phone, so email or texting could be a viable option.
That is also why being an early FHIR adopter is exciting, Davis said. The technology aligns with changes to the way consumers now expect to access information.
“I see a positive trajectory with [technological] adoption with patients as well, so it’s an exciting time,” she stated. “We are really staged now to begin to serve information up that patients really want and that they will use to improve their health.”
Healthcare organizations can start communicating more clearly with their patients on the patient data access process, ensuring that patients know their rights under HIPAA and know what technological options are available with their provider.
Providers also need to remain flexible and available, as this can help the increasingly consumer-centric industry. Patients want to know that their needs can be met, and that their questions will be answered in a timely fashion.
Ensuring access to patient data and offering secure communications with a provider are essential in the move toward value-based care and true healthcare interoperability.