Digital Communications with Younger Patients Can Yield Both Benefits and Ethical Pitfalls

Keeping young patients with long-term health concerns engaged via text, email, and phone calls might improve outcomes and reduce healthcare costs down the road. On that road, however, there are plenty of challenges to consider.

Millennials are heavily dependent on mobile communications, that's known: but rather than decrying distractibility, a group of scientists in the UK have been studying how mobile technology can improve healthy engagement. Specifically, they are observing how texting, emailing, and calling can help young people, aged 16-24, in managing long-term physical and mental health conditions.

The LYNC Study has been running out of the University of Warwick for a few years now to determine “how, why and with what effect digital, clinical communications can be used with young people and their clinical teams” within the UK’s National Health Service. This week they published a First Look at some of their work in National Institute for Health Research Journals Library, after publishing another report of their research in the Journal of Medical Internet Research earlier this year.

Professor Frances Griffiths is a Joint Principal Investigator on the project. “We became aware that there were clinical teams all around the UK who were beginning to use digital communications with their young patients, but they were doing it in an ad hoc way,” Griffiths explained in a recent video on the work. “We wanted to look at how these innovators were developing the service so that other people could actually learn from it.”

The Warwick group studied 20 different clinical teams within the NHS that were using some form of digital communication with their younger patients. The belief is, according to the First Look, that “young people…with long term health conditions tend to disengage from health services resulting in poor health outcomes,” but that their “prolific” use of digital communications could be leveraged to maintain engagement and improve outcomes.

The work looks at 165 patients aged 16-24 with long-term health conditions ranging from diabetes to sickle cell, liver disease, cancer, or mental conditions. It also includes insight from 173 involved health professionals. Much of the data is qualitative, stemming from interviews with the young patients and their clinicians.

“Young people and clinicians reported that timely digital communication enhanced engagement, reduced patient anxiety, and improved trust between the young people and their clinicians,” the JMIR report noted. It quotes several young patients who state preference for digital communication as a means of reducing office visits, enhancing personalized care relationships with their nurses and doctors, and improving self-management.

Some clinicians, on the other hand, reported that it may have had an adverse impact on their own comfort at times. One is quoted as not knowing how to appropriately respond to one patient’s “huge number of emails”; another reports concern that a patient might harm themselves based on the nature of their communications.

The new First Look report does not dive into those scenarios, but it does point out numerous other risks. “Digital media magnifies risks relevant to all forms of clinical communication: gaining consent, inadvertent disclosure of confidential information, communication failures, failure to record the communication in clinical notes and failure to consult clinical notes,” the authors write.

The LYNC report from earlier this year did feature an exploratory questionnaire. It found the amount of time spent by clinicians communicating with patients varied widely: the mean time was 76 minutes per day and the median was 45 minutes, but 28.7% of respondents said they used digital communications with patients “rarely” or “never” while 21.7% reported using it over 2 hours per day. Averages ranged across different roles within the care team.

Its usefulness to younger patients seems clear, and 66.6% of 165 young respondents reported a willingness to pay even a modest monthly sum for the service (many of the patients from a mental health site in the survey protested that it should be free). In the short term, the LYNC reports indicate that the communications may be costly in dollars and hours, but they postulate that in the long run they could save the NHS a good amount of money if they can improve care for expensive conditions like diabetes.

Digital interactions with young patients certainly will not replace the importance of face-to-face meetings with clinicians, and the ethics of the scenario may raise eyebrows. Still, the LYNC authors believe that such interactions are inevitable, capable of providing huge benefits, and that a correct approach could achieve safe, ethical, effective implementation. Down the road, they hope to develop Digital Consultation Guidelines for use within the NHS.