Today, electronic health record (EHR) systems are the norm, not the exception, and an increasing number of these systems now offer patients online portals where they can access their medical information directly. Not all patients use these systems, but those who do are coming to expect easy electronic access to their medical records, including radiology reports.
Responding both to this patient preference and the availability of new communication technologies that simplify sharing electronic copies of radiology reports securely and privately with patients, some radiology providers have begun to provide patients with direct access to their radiology reports. Offering patients direct electronic access to their information, however, increases the role of the report as a patient communication tool and poses some practical and ethical concerns.
Will a practice be able to support patients who may be confused by the medical terminology in reports and seek clarification from the reading radiologist? What happens if a patient shares the electronic report or accompanying images in a public fashion such as on an online blog or through social media? What if a patient misunderstands the report and makes a bad medical decision because of it?
Several Radiology Business Management Association (RBMA) members who represent various practice settings and offer patients direct access to radiology reports agreed to share their experiences with the readers of Radiology Business Journal.
They offered insights into their experience and how it impacted overall patient communication.
New tools, not new rules
Before one becomes overly concerned about patients having electronic access to their radiology reports, it is important to remember that patients actually have always had access to these reports, says Elizabeth Quam, executive director of the Centers for Diagnostic Imaging (CDI) Quality Institute, Minneapolis, Minn., and chair of the RBMA’s Federal Affairs Committee. The only difference is that now they do not have to go through the trouble of getting a paper copy through a provider’s medical records department.
CDI is a Minneapolis-based imaging provider and management company with operations in 40 states. CDI patients have electronic access to radiologists’ reports through a secure online portal once the patients complete a short sign-up process that verifies their identities and ensures the confidentiality of their legally protected health information. Quam says that several important benefits accrue from sharing reports directly with CDI patients. They include the potential to reduce the risk that scans will need to be repeated by another provider because previous imaging reports cannot be located and making patients more engaged with and informed about their care.
CDI radiologists are aware that patients have greater direct access to their reports. While it does not really change how they write reports, it has led to an important rethinking of how reports also can be patient communication tools, Quam says. “The courts have held that the patient record belongs to the patient and if it belongs to the patient, instead of saying, ‘Oh, the patient can’t understand it,’ ask what are we doing to help them understand it?” she says. “Would that not be the smartest and most ethical course to go forward?”
As radiology reports gain more structure and more standardized terminology is used, software tools can be applied to make reports more visual and interactive. Software can, for example, automate the linking of words in the radiologist’s dictation to definitions
and other patient education materials. Videos can be added to reports that explain how to read them. Images can be imbedded in the text and graphics can display results in ranges from normal to abnormal instead of just a number.
“Consider how images looked 100 years ago when they were x-rays on film and how different that is from what we have now with digital images and PACS,” Quam says. “Yet, our radiologist report still looks like it did 100 years ago.”
RadNet is in the process of rolling out direct access to radiology reports through a patient portal at all of its more than 250 imaging centers, says Susan Hollabaugh, RadNet director of clinical systems interoperability and an RBMA member. This does not change how RadNet’s radiologists write reports, because their primary purpose continues to be the communication of clinical information to the ordering physicians. It is, however, leading to a rethinking of the radiology report within RadNet.
“We have lay letters already for mammography, and we have had a lot of discussion internally about how we can take the mammography lay letter model and try to extend that to other modalities,” she says. “It is not something we are actively working on today, but we are starting to talk about how lay letter or patient reporting could look in the future. There is a lot of interesting work that can be done on that.”
One issue with current radiology reports, Quam says, is that they are not always written to stand on their own because radiologists, particularly those working within the same institution as the ordering physician, can communicate additional clinical information through direct contact with ordering physicians. The patient, not having access to this colleague-to-colleague physician communication, is at a disadvantage. “In today’s world, the radiologist’s report must stand alone, be thorough and have all the information in the report—because the patient deserves that,” Quam says.
Radiologists whose reports are shared directly with patients also are starting to take more care to avoid obscure medical terminology when it is not needed, says John Crues, MD, medical director of RadNet. “I think there has been a shift away from the concept of the doctor as the all-empowered director of medical, to one in which doctors recognize that there is a shared responsibility for medical care between the physician and patient,” he says.
This means that radiologists need to dictate reports with the understanding that it goes to both the patient and the ordering physician. Furthermore, they should welcome discussing their report findings with both audiences, even if it cuts into traditional measures of radiology productivity. “Talking to patients is a significant responsibility that they have, and if they are not interested in talking to patients, they shouldn’t be physicians,” Crues says.
Patients can call, few will
RadNet’s online portal for direct access to radiology reports contains a link patients can click if they need help, but relatively few use it for clinical needs, preferring instead to work with their treating physician, Hollabaugh says. Typically, they only receive about seven messages per day and most of these are about technical assistance with using the portal and not about the clinical information.
“Most patients don’t want to talk to the radiologist because they don’t know who the radiologist is,” Crues explains. “They want to talk to the referring physician, so my experience has been that there hasn’t been a whole lot of patients calling and wanting to talk to me.”
What happens instead is that about once a week or so, an ordering physician will call and ask Crues to discuss the report with a patient because he can explain the importance of the patients’ imaging. Taking the time to have these conversations at the request of the ordering physician definitely shows radiology’s value and is, according to Crues, part of every radiologists’ job.
CDI has found the same. “What we have seen is that close to 10% of patients are accessing their images and reports online, and it is going up about 1% per year,” Quam says. “But we don’t get a flood of phone calls, because we always encourage them to go back to their treating clinician with questions, and that is the appropriate place for it to go. However, in the interest of the future of radiology, I don’t think we should be in the business of discouraging questions.”
The experiences of RadNet and CDI were confirmed by a study earlier this year published in the Journal of the American College of Radiology. David M. Naeger, MD, assistant professor of clinical radiology, co-director of the Henry I. Goldberg Center for Advanced Imaging Education, and associate program director of nuclear medicine residency at the University of California, San Francisco, conducted a large survey of patients at UCSF and a local community hospital. It revealed that most patients prefer to receive their results from their ordering or treating physician and not a radiologist.
“There are a couple of reasons for this,” Naeger says. “One reason is that the ordering physician is the one the patients know and the one who will be discussing the next steps. The other reason is that patients are still very unfamiliar with radiologists and what they do.”
The take-away for radiology, Naeger says, is that patients want access to their radiology reports and their images. Radiologists need to welcome this and use it as another opportunity to continue to educate about their value. While radiologists need not change how they write their reports, they may want to pay closer attention to the typos that can creep in through voice transcription and automation of text. Patients interpret typos as a sign of lack of attention to accuracy, Naeger says.
Another idea is to create an expectation in your department that although the volume of patient questions may be low, responding to these patients promptly and talking to them directly has value. Naeger advocates for creating a hotline for patient and provider calls that is staffed by radiologists on a rotating basis.
“We need to be in the position where we show our expertise to the patient and the provider,” he says. “If that service is desired and we can find a way to provide it, it can only be good for us,” he says.”
At UCSF, patients have had direct access to their radiology reports for several years, and the system now contains a secure electronic messaging function that connects them to their primary care provider. Yet requests to speak directly to the radiologist remain relatively rare.
“It is a very small percentage,” Naeger says. “The patients that call us tend to be the patients with very serious medical conditions who have very frequent contact with providers and understand the role of the radiologist.”
Privacy in the age of social media
Another concern with giving patients electronic access to radiology reports is what happens if patients then share that information in other non-secure electronic formats. Charlotte Radiology Charlotte, N.C., an RBMA member practice, is just starting to share radiology reports directly with patients. It is an acknowledged leader in radiology practice marketing, with expertise in social media communication with radiology patients.
Joseph Decker, marketing and public relations data and web manager, Charlotte Radiology, says that while he has not personally seen a Charlotte Radiology patient sharing protected health information online that could lead to medical identity theft, patients will sometimes name specific imaging tests they had and the date and location of the Charlotte Radiology facility where they had the test.
“It is the world we live in now,” he says. “With social media, for better or worse, people are more comfortable sharing personal information out on the web. It is not just medical information. As someone who deals with social media and understands from a technical point view how having your personal information out there can really affect your life, I don’t necessarily like it. However, some of it can be positive as well. There are patients that we have seen that might have received a cancer diagnosis, and they are documenting their journey for the world to see online. There is strength in that transparency. They gain support, and they show other people out there going through the same thing that they are not alone.”
Charlotte Radiology monitors its social media pages as well as all online mentions of its name on blogs and websites, but generally does not intervene in patients sharing details about their care that would be considered protected health information unless the patient or the patient’s representative wants to engage in a discussion directly with Charlotte Radiology on a public forum.
“When that happens, we are going to do everything within our power to take that conversation offline and not have any conversation about personal health information on social media,” he says. “If someone refuses and doesn’t want to take the conversation offline, we are going to do everything we can to address that concern, but we also are going to make it known that there is only so much we can do for a patient in a public forum.”
Decker points out that while there is a great deal of concern about social media because it is still a relatively new way of communicating with patients, it remains just another channel of communication, and the rules that apply in other situations also apply here.
“It is really like anything else,” he says. “If someone came into our office and wanted to speak with us about a patient at the front desk, it would fall under certain guidelines and policies about having authorization to discuss someone’s medical condition. We try to treat our social media as just another tool for communication, and we use the same processes and same best practices for ensuring that we are not sharing any personal information that we shouldn’t be sharing.”
One of the most common and positive instances of medical imaging being shared online is pregnancy ultrasound images. Hollabaugh says some RadNet centers have now taken it upon themselves to help patients share these images safely by providing them with pregnancy ultrasound images specifically formatted for posting on social media platforms.
Communication strategies to reduce harm
The downside of being in a transition era where the patients can access their medical images and radiology reports in new ways is that there could be some unintended negative consequences along with the benefits. The most serious harm that could come to a patient is if a patient misunderstands a radiologist’s report and makes the wrong decision about their care as a result, Naeger says.
“It is not ever sufficient for a patient to interpret what the report means and make a decision on their medical care based on just reading the report,” he says. “It should always be in discussion with the physician who ordered it.”
There also is the risk that a patient will experience distress after finding out about a serious imaging finding online instead of through a conversation with a doctor. UCSF has built in a delay in the release of many imaging reports to give ordering physicians time to review the report first and call a patient ahead of time if necessary. RadNet employs a delay with some of its East Coast imaging centers for the same reason, but provides direct access in California.
“The reveal of a brand new unsuspected potentially serious diagnosis is the worst case scenario, that is the one that will lead to the most anxiety and the most urgent questions by patients,” Naeger says. “However, most of the time, it is not that scenario. The patient knows what the study is for and the information that comes back is not terribly surprising, so the concern is just not relevant.”
UCSF initially employed a 10-day delay, but this has dropped to just three days. The concern about a patient learning a result online first has not turned out to be as serious as initially thought.
Crues says he expects that the delay in some RadNet reports being released may eventually go away as well. “I fully expect that in a year or two, we will find that there really aren’t issues with releasing reports immediately, and we will release them immediately everywhere,”
he says. “But we have not made the decision yet.”
Mammography providers have after all been releasing report findings direct to patients for a long time. The issues that occur with mammography reports have more to do with false positives and negatives leading to patients being upset than patients being upset by getting the results directly, Crues points out.
As ways to communicate with patients evolve, strategies may well involve taking both a more hands-on role in making radiology reports more patient friendly and a hands-off role in what patients choose to do with that information online and through social media. The key will be for radiologists to remain involved in this evolution and continue to be the expert advisors who can reassure patients about their findings and answer questions their treating physician cannot.
Lena Kauffman reports for the RBMA and is a contributing writer for Radiology Business Journal.