Neuroscience Forum: a scientific group on “smartphones”

To the Editor: Neurological disorders are common in daily practice, and the specialty is developing and expanding in Saudi Arabia.¹ However, professionals working in various neuroscience fields are not many and are under increasing pressure to see many patients, often with complicated problems.^1,2 Therefore, these services are generally busy with a large volume of referrals and consultations, in addition to staffing limitations. On the contrary, Saudi Arabia is a large developing country with most urban population widely distributed between the central, western, and eastern regions.³ In addition, rare genetic and inherited neurological disorders are more prevalent as a result of high consanguinity rates.⁴

Because of these challenges, attempts were made to develop a quick and effective way for neuroscience professionals to communicate, share cases, and consult with each other, particularly when faced with difficult or unusual cases. An initial group of neuroscientists across various regions of Saudi Arabia, led by the author, established a scientific “Neuroscience Forum” in November 2014 using the smartphone application “WhatsApp” aimed to discuss cases, updates, and share scientific news.⁵ Consultants in the fields of neurology (pediatric and adult), neurosurgery, neuroradiology, genetics, metabolic, neurophysiology, psychiatry, and psychology were included voluntarily. The group was an instant success, reflected by the increasing number of requests for joining the group. However, several rules had to be enforced strictly, including no political, religious, or social material to be posted. All members also agreed to delete all digital materials related to patients, to ensure anonymity of patient identity, once such material was reviewed. Only the attending consultant was allowed to share such information after obtaining patient and/or family consent. However, maintaining patient and family confidentiality remained a concern because of the lowered security level of such online programs. The group counted on the professionalism of the members who agreed never to share patient data or break the rules of confidentiality.

It was not too long until this “Neuroscience Forum” group became well known and popular with increasing membership requests. The group needed to be expanded beyond 100 members, which was one of “WhatsApp” program limitations. Also, enhanced security and the ability to share larger documents, images, videos, and PowerPoint presentations were needed. Therefore, the group moved to another smartphone application “Telegram,” which could provide these services, free of charge, in addition to the optional access through personal computers, including desktops and laptops.⁶ This program was considered “secure” when compared with “WhatsApp.” In addition, the group administrator ensured that all images and files were shared without patient identification information. The membership was then expanded to cover most regions of Saudi Arabia. A given physician in Jazan (south) or Hail (north) could immediately consult and communicate with another expert in Jeddah (west) or Riyadh (center). Of particular benefit were expert neuroradiologists and specialists in rare subspecialties. The group was subsequently expanded to include subspecialty fellows in training programs outside Saudi Arabia in areas such as stroke, epilepsy, myology, and neurophysiology. This opened the door for opinions from experts working in higher tertiary care centers and provided access for referrals.

Finally, the importance of strengthening the personal and social links between established members of the “Neuroscience Forum” could not be overlooked. Therefore, nonscientific posts were allowed for 1 day per month (open day), which was enjoyed by all members. They voluntarily presented social material related to their families, hobbies, travel, and so forth. This successful scientific experiment can be encouraged in large countries, particularly in areas of compromised services and specialties.