Telehealth Brings New Privacy Concerns
By Sandra Ray, Staff Writer
Telehealth systems are gaining popularity with older adults with chronic illnesses who desire to stay at home as long as possible rather than rely on long-term care options outside the home. Even though older adults tend to be more tentative with new technology, some are accepting the monitoring systems as a way of staying independent in their homes.
Caregivers, too, appreciate the comfort that a remote monitoring system can provide. Many times the caregiver is a concerned family member with other obligations outside the home. For example, more adults are caught in the “sandwich generation” – a family with young children of their own who are also caring for aging parents. Telehealth options provide information about activities of daily living and offer comfort amid the “busyness” of every day lives. Aging relatives can live safely at home, and caregivers also have methods to determine when issues arise that need to be addressed.
With more technology in the home, privacy concerns should be considered. Most important is a patient’s right to privacy about their medical conditions. The Health Insurance Portability and Accountability Act (HIPAA) was passed in 1996 as a means of protecting patient privacy and still allowing medical personnel access to information that was needed to provide care. Each agency or entity that will view confidential medical information must take steps to protect the information and inform patients as to how their information is shared. Patients can even designate who can have access to their medical files.
Despite this groundswell for privacy concerns, some patients may be willing to accept others having access to their information as long as it allows them to remain at home safely and independently. This statement was addressed by research findings in a study by Georgia Institute of Technology in 2004. The project invited older adults, ranging from age 65 to 75 years of age, to view the facility and help discuss ways that technology could assist individuals who wanted to “age in place.” Instead of voicing privacy concerns, these adults indicated that as long as the technology helped them to age independently at home, they would be in favor of having them in their homes.
Current Systems and Associated Privacy Concerns:
The Civic Research Institute issued a home health technology report titled “Ethical Considerations of Home Monitoring Technology.” Several types of systems are addressed in terms of how intrusive they are to a patient’s every day life and the type of information that it gathers. On the low end are “unidirectional” systems such as personal emergency response systems (PERS). These devices can be worn as bracelets or necklaces and activated in the event that a person experiences an emergency. No data is gathered about their general well-being and overall health and they decide when to communicate with a monitoring center. For people who only want peace of mind in the event of a serious health crisis or fall in the home, these devices give the patient control over when to release information and to whom.
Systems like QuietCare meet the Institute’s criteria for a “moderate-technology level.” QuietCare places small sensors in the home that record events of daily living and gather information based on movement around the sensor. A sensor that is positioned by the bed, for example, would give a caregiver or physician data about when a person went to bed for the night or took naps during the day. If someone is prone to wandering at night, this same sensor would report when the person left the bed, returned, and perhaps left again. A caregiver could then help the patient discuss night wakenings with a physician to determine if it is a cause for concern.
David Stern, CEO of QuietCare, noted that telehealth systems need to be “mindful” of how these systems are used in the home, “allowing for appropriate help at the appropriate time.” He also said that physicians are often amazed at how much information about a person’s daily activities can be captured from sensors like those his company installs.
There are “high-technology” systems that can record much more complex pieces of data, providing, at times, intimate information about a person’s daily life. For example, radio tags can be inserted into clothing and household items that transmit data back to a monitoring system when these items are worn, touched, or otherwise activated. Pressure systems in a person’s favorite chair can tell a caregiver how long a person sits during the day, providing information about the amount of physical activity that the patient may have during the day. Cameras in the house can give snapshots (either “still shots” or streaming video) of the overall activity level. There are systems that can record and transmit information about a person’s weight, blood pressure, temperature, blood sugar, and other vital statistics. For patients with serious chronic illnesses like congestive heart failure, these types of systems may be the best fit since a change in weight could signal a need for an immediate doctor visit.
Addressing Privacy Concerns in Advance:
Experts in the field suggest that before caregivers and patients consider installing a home monitoring system, that they take the time to assess a variety of questions. These can include:
- Who will have access to the information?
- How will that information be used or shared?
- If caregivers can access the information, have they been trained in using the technology and reporting systems?
- What are some short-term goals that families expect to meet by installing a home monitoring system?
- In the long-run, what will the family gain by having the technology in place?
- What happens in case an emergency occurs? In families with more than one caregiver, who will respond?
- Who will pay for the system? Insurance and Medicare are reluctant to provide payment. Private pay or subsidies by an organization in the community may be an option.
Since there could be many people who would have a “stake” in the remote monitoring system, it is necessary to have these discussions in advance. For example, if an adult caregiver of a parent feels like the system is necessary, yet the parent is not willing to accept it in the home, the concept may cause more stress than it would prevent. Further, if a physician’s office deems it medically necessary to monitor someone from home, there may be more than one person who needs to be trained on the system. Frank discussions about what the data may mean and the context in which it should be interpreted are in order.
Safety of Electronic Data:
The Civic Research Institute cautioned that responsibility accompanies privacy and ethical considerations in terms of sharing that information in a way that can have the most meaningful impact on the person who is being monitored. Clearly defined protocols for sharing data electronically (i.e. electronic health records or email) need to be developed. Wireless transmission of data brings its own set of unique privacy concerns since the ability to intercept transmissions certainly exists. It is not beyond the scope of imagination that a person motivated to gain access to someone else’s health records would be able to intercept data and decrypt it. Investigative research and protocol sharing in this area still needs to be performed.
Trading privacy for security may not be as clearly defined as the Georgia Institute of Technology study would have patients believe. The next generation of elderly – Baby Boomers – may not be willing to accept technology in the home that can track and record movements, transmit information to other family members and a doctor’s office, and still purport to remain private. Further research to determine how much privacy individuals are willing to give up in order to remain in the home still needs to be done in order for telehealth systems to continue to develop.
For those who are comfortable using the technology in the home, it is able to accomplish many tasks, including helping keep family and physicians informed about basic health concerns. It helps overcome many barriers, like forgetfulness and patient compliance issues. Those who opt to use it should consider the ramifications of relinquishing some measure of privacy and determine if the trade-off is worth it.