There are various schools of thought surrounding the early days of the World Wide Web, but it is generally accepted that its primary intended purpose was the digital exchange of scientific research information. It has, of course, morphed into something far more complex and wide-ranging, but the central concept of sharing survives and, when we think about the saturation of social media, it actually defines the internet today.
In a modern analogue of this journey, these three primal concepts of scientific data, dissemination and technology have recently come together in a medical context: the proliferation of patient access to their own imaging information in the US.
"Twenty years ago, nobody had this information in a digital format," says Dr Keith Dreyer, chair of the American College of Radiology IT and Informatics Committee. "Images were still on film. In the last two decades, however, the information became available, and in the last 15 years, it became practical to display it on consumer monitors. Then, in the last ten years, it became viable to distribute it over the internet."
Indeed, in the US, the FDA has approved the visualisation of medical images on mobile devices. So now, people can even use smartphones for critical review. Patients can also access their information on smartphones, tablets and laptops, whose high-end displays are finally capable of displaying medical imaging detail.
One might argue, however, that progress to get to this stage could have been faster, especially when you considered that the ethical stance on patients owning – and taking a certain amount of responsibility for – their own medical imaging information has largely been favourable.
"I completely think it is the right thing to do," Dreyer says. "Ethically, it is absolutely correct. But there have always been questions about who owns the data. Is it the facility that takes the scan, the physician that interprets it, the hospital where the patient was seen, the insurance company that pays for it with the patient’s premiums, or is it the patients themselves?
"This has been a long time coming because of the litigation potential for putting information out there in various forms electronically. But I think now, because of the federal government’s definitions of a lot of these mechanisms for communication, this has become the standard of care and ethically the right thing to do."
The most recent legislation in the US, to which Dreyer refers, makes it clear that medical imaging data belongs to the patient. The regulation, known as ‘meaningful use’, defines the use of electronic health records (EHRs) and related technology within a healthcare organisation. Achieving meaningful use compliance also helps determine whether a medical facility will receive payments from the federal government.
So, there is a clear financial incentive to implementing meaningful use, but this is outweighed by its practical implications for the healthcare of patients.
"Everyone benefits from secure but easy availability of new and historical exams," explains Dr David Mendelson, professor of radiology at Mount Sinai Medical Center in New York. "It cuts down on inappropriate repeats. All physicians, especially radiologists, understand the benefit of having historical exams for comparison."
Moreover, on a more practical, everyday level, few people receive their imaging from one location; almost all of them will use multiple locations during their lifetime for general and imaging care. It stands to reason that care will be improved if patients become the curator of their own medical history.
"If I have all of my medical imaging available to me electronically when I go to see a new physician or I change geographical location, the fact that I have this access is going to help that physician make a smarter, more informed decision," says Dreyer.
"Many patients want to know what is going on with their care in detail," adds Mendelson. "They are often their own best advocates for expediting healthcare delivery."
Early and late adopters
Not everyone has made a smooth transition to new technology; it’s a changing process in the US. Physicians are used to seeing patients in their office and managing their care that way, providing information back to them using standard mechanisms. But, in the last five years, there has been a rapid proliferation of EHRs, sparking a culture shock for some.
"I think what’s happening is that physicians are trying to get a handle on how to communicate with patients electronically," Dreyer says. "You hear concerns about getting a sudden influx of emails from patients. Could they handle that; how would they build for that kind of access?
"Some of the late adopters are taking that approach, but the early adopters are embracing the concept and the technology. They understand that patient-centric healthcare is the future."
Dreyer adds that he has heard stories about physicians making images digitally available five to ten years ago, only to be met with resistance from patients concerned about security, access and privacy. Now, however, patients are the ones pushing to have electronic access to their information while most physicians are becoming more comfortable with the whole process, largely because meaningful use regulation is clarifying their position.
"A lot of this is changing rapidly, particularly with the meaningful use incentives towards electronic health records," Dreyer says. "These mandates, which might come through in stage III of the legislation, will require radiologists and other medical imaging physicians to make medical imaging records available to patients electronically within a set time frame."
Time and process are important factors in a medical imaging context; some radiologists, for example, would have been reluctant in the past to share imaging with patients so quickly that their ordering physician would not have seen them first. But now, because meaningful use will dictate a time frame for the communication of images digitally to a patient, that pressure is released. There are, however, different concerns on the part of physicians.
"I haven’t really seen radiologists that are reluctant to give images out to patients," Dreyer says. "For other reasons, though, some of them technical, they’re not familiar with the security and what liability they might have when exposing information outside the firewall.
"But with the meaningful use legislation that’s coming through and the requirement to use certified EHR technology, one of the measures and objectives is that you have to demonstrate that you are securely transferring data. So the physician buys technology that has already been certified secure. All the wiring, if you like, is in place to allow the secure sharing of patient information over the internet."
The technology itself may be fit for purpose, but there is a more subtle adaptation to be made because of the change in process that is required. Whereas radiologists, for example, have been used to generating reports directed towards referring physicians, now patients are going to be reading the reports directly, sometimes before their ordering physician sees them.
"We have to make sure that we communicate with patients appropriately," Dreyer says, "and not just in writing the report itself. We also need to make additional information available to them around what some of the terminology we use means or even about the ordering process – what exam they’re about to have and how to prepare for it. It behoves us to be more consumer oriented in the delivery of our results and information.
"It’s a different audience," he continues. "Sometimes, patients are extremely well informed about their care and sometimes we are answering a question of the ordering physician at a moment in time. We have to consider changing the scope of our answers and impressions of what we see."
Bureaucracy vs technology
Dreyer concedes that the full transition to a digital access system for patients could be a little bumpy at first in terms of how imaging centres will enable it to happen. But, after this initial phase, he believes the process as a whole will be less bureaucratic.
"When a patient shows up, or calls up, and asks for their imaging because the physician that they’re meeting next month wants to see that information, they used to have to come down to the facility to receive a CD-ROM, or films, and they’d have to fill out forms – all of that is going to be more streamlined now," he explains. "When they leave a facility, they will understand that their data is available automatically. There are some facilities that already provide that kind of service to their patients."
"Many patients are already using the internet to inform themselves about their health," adds Mendelson. "This is complementary data to assist patients who are interested and somewhat knowledgeable. They are the most motivated to ensure that the correct exam is expeditiously delivered to the clinician. They cut through bureaucracy."
So if technology already arms patients with the medical imaging tools to simplify and speed up their own healthcare, what other benefits will it provide in the future?
"For the most part, patients should be able to see all of the imaging data that has been acquired," says Dreyer. "Next, in some systems, they may be able to make requests to update their records with new addresses, insurance details, or new names if they get married. Thirdly, they may be able to do more advanced things like say, ‘I have an appointment in three weeks but I’m unavailable at that time, so I want to request a change.’ Finally, further along the line, for things like mammary scans or lung scans for cancer, they may be able to order these directly online."
Now that the technology is in place and there is a level playing field for what’s required, and the standards of transmission rates, compression and display technology have been raised to the level of medical imaging technology, what patients and physicians alike will see going into the future is a broader acceptance of the system.
"This will be the new standard: to be able to receive data online, on time, in a digital format," Dreyer says. "Years from now, people will look back and think it was an unacceptable period of time that we had to wait to get our medical images. They’re off the scanner in a matter of minutes, they’re available for critical review in a matter of minutes; they should be available to the patient in a matter of minutes as well."