Reprinted from Eating Disorders Review
September/October Volume 26, Number 5
Virtual Communication Offers Bonuses, but also Challenges, for Eating Disorders Patients
One of the highlights at the ICED meeting in Boston was new information about the ways that developing technologies and virtual communication are changing management of eating disorders. These new electronic tools are reaching patients in remote areas, connecting support groups, and offering new treatment options. The overall theme, “Communication: ICED Today and Tomorrow,” was reflected in two sessions in particular.
At a plenary session, “There’s an App for That? How Technology is Changing the face of Eating Disorders Treatment, Research, and Advocacy,” Drs. Lisa Gualtieri, Eric Van Furth, and Margaret Morris weighed the many promises and pitfalls of what they termed the “electronic stampede.”
Helping patients ‘at the intersection of healthcare and technology’
Dr. Gualtieri teaches methods for integrating technical media into public health at Tufts University School of Medicine, Boston. Her expertise lies in analyzing the ways patients use technology, and she noted there are promises and pitfalls for working “at the intersection of health care and technology.” She added, “Our lives have been profoundly shaped by technology, and sometimes we forget how greatly technology is infiltrating our lives.”
In this cultural shift, Dr. Gualtieri told the audience, almost everything we do has a technological component. People across all demographics now approach their health care by increasingly relying on the Internet, social media, and their mobile devices. Dr. Gualtieri said that 72% of Internet users currently seek health information online; the only two groups with significantly lower Internet use are those over 65 years of age and people without a high school diploma. This change is taking place in the midst of a cultural shift, where technology has become part of all our lives and where “social capital” has changed, she said. Some of the negative results are cyber bullying, the demise of social interactions, and excessive use of online medical information rather than in-person consultation with a clinician. She warned that the highly variable quality of information on the Internet can put patients at risk; with this information, patients now decide whether they need a doctor because Internet sources can provide "second opinions" online. “Technology can become a prosthetic device—not only are patients not consulting their doctors, but they are relying on their own Internet skills,” she said.
The cure is to put technology in its proper place, said Dr. Gualtieri. Patients are not taught good health literacy skills, for example, how to seek information and what to believe and when to be skeptical. Clinicians can take an active part in changing this by learning to ask about patients’ online research skills, and then helping them improve these skills. The cure also involves better training for health-care providers. According to Dr. Gaultieri, this means giving patients better starting points to help them guide their online searches, using expertise to guide technology use, and becoming better informed about what patients are doing online. Instead of a rush to create smaller and smarter devices, it makes more sense to help people when and where they need it, she said, because health care decisions based on the patient’s own apps can be wrong and can cause incredible harm. Instead, she urged clinicians to understand why patients go online and what they do once they are there.
Earlier and cheaper electronic treatment interventions
Dr. Eric van Furth, Clinical Director of the Center for Eating Disorders Ursula in Leidschendam, the Netherlands, described two eHealth interventions, Recovery Record and the Dutch information website, Proud to be Me. Both are examples of how electronic approaches can help patients and their families overcome barriers to care and general lack of information about eating disorders, he said. The pervasive denial of illness by anorexia nervosa patients and the shame and fear in those with binge eating disorder or who binge-eat have led to an average delay of 5 years between the onset of illness and patients actually getting care, he noted.
Recovery Record, an application for smartphone users, is the most downloaded app for eating disorders patients in the world, and now has 300,000-plus users, he said. Forty percent of Recovery Record users never told anyone about their eating disorder prior to using the app, Dr. van Furth added.
Dr. van Furth urged clinicians to expand their knowledge of virtual apps because “we are not reaching the vast majority of people with eating disorders.” For example, he pointed out that 50% to 75% of persons with eating disorders in Europe have no access to treatment. Since a shorter duration of illness translates into better prognosis, why not try to reach individual earlier and more cheaply? EHealth approaches may provide one way to improve early diagnosis and to fast-track people to help. Such approaches also can optimize care for those with chronic illness, and provide cost-effective care.
Proud to Be Me is maintained by two eating disorders survivors, who provide blogs and new emails each day, and the site is linked to all widespread social media, such as Facebook. The website is an alternative to pro-ANA sites and operates from a positive focus that emphasizes recovery, Dr. van Furth said. Proud to Be Me was launched in 2009, and users can register under a pseudonym. The website has three main functions, he said, “breaking the silence, which offers downloadable letters for patients; peer support, where patients meet others online who also have an eating disorder; and it also acts as a guide for finding treatment.” Individuals also have a forum for rating treatment centers on 5 different scales. Visitors can pose questions for clinicians 365 days a year. Chat rooms are arranged by age groups.
Dr. van Furth said that while the Netherlands has only 17.5 million inhabitants, in 2014 Proud to Be Me had 2 million unique visitors and 10,000 to 15,000 unique visits per day. Each day individuals spent an average 5 minutes on the site. There have been 27 million page views. Use of eHealth shows some promising results on bulimic behavior, depression, and anxiety. Dr. van Furth added, “EHealth is about expanding our reach and improving outcome, but also needs to be empirically tested in randomized controlled studies.”
Aligning electronic tools with disease management
Margaret Morris, PhD, a clinical psychologist and senior researcher at Intel Corporation, is a pioneer in mobile therapy and making psychotherapy more accessible to patients. Dr. Morris said, “No matter how great your reach is, or how great your insurance, during the last 10 years mobile technologies have become part and parcel of the strategies we use today.”
Dr. Morris reviewed the Mood Phone, the Mobile Digital Scale, Tinder, Crowd Sourcing, and Crowd Pilot, and described ways that therapists, researchers and individuals are using these devices in everyday life. Mood Phone was originally intended to be used as a personal tool that augmented therapy, particularly as a means for managing anger and personal conflicts. Its most beneficial use has been in what she termed ‘reprisal relationships,’ where it enables the individual to see another’s perspective. The Mobile Digital Scale has been changed in the last few years but still provides behavioral motivation messaging, and data can also be used in caregiving. Tinder, originally a sexual “hookup” tool, has been useful for self-validation, she said, and provides a way to gather and share information. One use encourages women to submit instances of sexual harassment, disclosing the identity of the harasser, and offers new strategies for coping with harassment. Crowd Sourcing, which was designed for disseminating labor, is used instead for getting psychological consultation. Crowd Pilot is a twist on technology that echoes the mood phone, and provides a model for how emotion can be presented and how people can modulate a relationship.
Using blogs, video chats, support groups and apps
In an ICED workshop, four panelists described their experience in creating and using virtual media. There was a consensus that patients are more likely to seek medical information from the Internet first before consulting a physician, and that with careful planning virtual media can be effective. All the speakers, who incidentally met virtually before meeting in person, also stressed the positive and negative realities of online information sites.
Perspective from a former patient
Cate Sangster, MA, a physical education teacher from Melbourne, Australia, has lived with an eating disorder and is using her knowledge and experience to help other patients in recovery. She noted that social media sites such as Facebook allow people to share information about eating disorders and that education is the number-one reason they use Internet sites. She added that, patients also keep themselves safe with social media, because the sites are available 24/7, and “when the tigers come at night” patients they can always find someone who will help. The positive feedback from other patients is beneficial because someone with an eating disorder may be more likely to discuss it with others after researching it online first. Improved mental health literacy is another benefit—the more an individual understands the condition, the more likely he or she is to get help.
Some of the risks of Internet site use include the availability of negative sites such as pro-ANA and pro-MIA sites. Patients may also encounter “trolls,” or individuals who go online only to make trouble. Misinformation may also compete with evidence-based information; to counteract this, she suggested that clinicians tell patients to contact and inform efficacy groups when they encounter false information. There may be a tendency for patients to try to self-diagnose and self-prescribe and social media should never be used to educate patients. Issues of privacy also arise.
How can clinicians help keep patients safe online? Sangster believes they can take a more active role in giving patients tips for using social media sites such as Twitter, and also can provide a list of trustworthy blogs. Professionals should not allow online relationships to be misunderstood or boundaries to be fuzzy. She said it important for clinicians to protect their own personal information and to maintain professional boundaries while remaining available to patients.
Help for parents
Ten years ago, writer and mental health activist Laura Collins Lyster-Mensh, MS, founded the Around the Dinner Table online forum, a site for parents and patients with eating disorders. On the site, users can select from 14,000 topics related to families and patients. Lyster-Mensh also helped found the websites Maudsley Parents,F.E.A.S.T., and Charlotte’s Helix.
Around the Dinner Table allows visitors to be anonymous while the organization is completely transparent, she said. On the site visitors can find stories of parents’ anguish, hope, and ideas. A team of 9 moderators in 4 countries are available so a visitor can get email support within 2 minutes. The site is in English, but future plans call for adding additional languages. Lyster-Mensh said the site helps visitors fight isolation, gain high-quality information, and view examples of successes and mistakes as well. It also promotes empowerment, and can be used to find volunteers for research projects. A few risks she mentioned included unexpected disempowerment when parents read positive stories and become discouraged about their own problems. And, like the trolls described before, some individuals pose as patients or parents ("Munchausen’s by Internet”), and post weird stories or wildly incorrect statistics. The moderators and other visitors correct the misleading information as soon as possible, she said.
Virtual aid for family-based therapy
Psychologist Dr. Sarah K. Ravin, who has a private practice in Coral Gables, FL, became involved in the virtual world when she agreed to write a blog about the F.E.A.S.T. program in 2009. The reaction to her first Internet post was huge, she said, and she learned that parents did not know a great deal about what treatment was available, and there was a definite lack of information available about family-based therapy. Having the virtual presence enabled her to spread the word to a larger audience and to reach out to parents who were seeking services for their children with eating disorders. It also enabled her to connect with other clinicians worldwide.
Dr. Ravin said that a few of the risks of a virtual presence are that parents may have inflated expectations, and their problems may be very serious and require a different type of care. While new technologies can expand the geographic research of treatment, long-distance care also presents a number of challenges. Dr. Ravin would like to see more outreach to local schools and pediatricians. She also said she hopes for the day when virtual advocacy is obsolete because all patients and their families have the information they need as soon as the diagnosis is made. Greater transparency and parental empowerment, along with evidence-based care, will go far to help parents and patients feel secure that their family is working to recovery.
Using Recovery Record
Lori Lieberman, RD, MPH, CDE, LDN, a registered dietician from Boston, described her experience using Recovery Record, the online record-keeping app described earlier. She has found the app to be especially useful for extending client care between sessions for selected and motivated patients. She stressed the importance of carefully selecting participants; in her practice clients participating in the program are mostly adults and young adults who are also seen in face- to-face sessions weekly or at least at regular sessions. Expectations are clearly stated, and she charges a fee for this service. Lieberman stressed that the online program is definitely not a substitute for regular office visits.
Lieberman reported seeing increased accountability from her clients, and has found that they value the professional relationship in a way that an anonymous therapist could not achieve. She has also seen the online program help patients move away from a distorted perspective about their eating, and professionals can respond to concerns in a timely fashion. There are no calorie counts or expectations or limitations, she said, and the virtual interactions make live sessions more efficient. Families are reassured and can be quickly engaged in discussions. Even with minimal feedback, participants report feeling “someone is fighting the illness with them,” she said
As all the workshop panelists noted, with a virtual system such as this there is a danger of patients selecting and using ‘snippets of information,’ and thus clinicians and support professional must carefully choose words and feedback, to avoid providing inadvertently negative feedback. Other drawbacks include the possibility that clients may not have the money to enroll; also, the service has the potential to be abused when a patient reaches out to the online source and not to a direct help line. Much depends on the patient’s self-assessment, honesty, and willingness to engage.
What is clear, Lieberman said, is that apps, video chats, and other Internet-based programs can provide incredible benefits for patients with eating disorders. One caveat is that professionals working with virtual media need to be well informed about the emerging technology and aware that “technology is changing faster than the law.” Because of this, serious issues need to be continually addressed, including changes in licensure, HIPAA compliance, and malpractice insurance as well.