New technologies and digital media that enable people to exchange ideas with one another, to network and generate media content individually or in a community are known as social media. They are characterized by relatively low barriers to entry and simplify the publication and distribution of the content of any kind considerably compared to traditional mass media. Experts differentiate between ten categories of social media.
In the meantime, doctors, nurses, and other providers are also increasingly using social media. Many clinics and medical practices use them, for example, to increase awareness, image building and patient loyalty. In addition to an official website, they also maintain a Facebook page or a Twitter account to address current topics and present themselves specifically. Used correctly, it can achieve a wide reach and target group-specific information, for example, to improve therapy adherence and prevention. Doctors in private practice can use these media to remind their patients, for example, about vaccinations, inform them about therapies and share news from their practice (such as the hiring of new employees).
Social media in their various forms should be understood as another channel that can be used for conveying information and for communication between providers and patients. The special thing about it is that the patients can also create content themselves. The idea of “empowerment of the patient” in increasing patient autonomy by transferring responsibility is only really put into practice through social media. Although there are also risks in this open communication and the associated handling of information responsibility – the quality and correctness of the health information are not guaranteed – but offers such as Wikipedia prove that the “wisdom of the masses” usually works.
In the area of rare diseases, the advantages of social networks are quickly apparent: those affected have the opportunity to find other sufferers and experts, to set up groups with them and to exchange ideas as if in a self-help group. These possibilities are already used many times. Experts report that they are informed about new developments more quickly via social networks than via specialist magazines or other previous information channels. These groups, which are often founded and maintained by patient associations, parents’ associations or other committed people, make it easier for patients to be recruited for studies.
However, this example also shows possible risks that lurk in the virtual world. In addition to false information or even forms of identity theft, it is difficult to ensure that patients are always well-informed and enthusiastic about studies. Therapeutic misunderstandings (such as the idea that participating in a “phase I” study could alleviate a patient’s suffering) cannot be recognized and cleared up based on short or lack of personal communication, just as in anonymous surveys, for example, age limits can be safely maintained. So if the Helsinki Declaration ( 2) in Section 30 requires the consent of legal representatives if incapable of consent, e.g. minors, are to take part in studies, it cannot be determined with certainty on social media whether a participant is of legal age. Specifications of applicable rules or new standards seem to be necessary here.
In addition, people post a lot of personal information on social networks, even if only for those with whom they are “friends”. There is a risk that users inadvertently reveal so much information about themselves that their identity can be determined or pass on information that could be used against them in the event of an insurance claim while looking for a job or stigmatizing them in a private context.
Disclosure of private information
Many also readily share that they or one of their relatives is affected by a certain disease. When one is hit by a bad stroke of fate, privacy often plays a subordinate role. Since the technology makes it possible to systematically and automatically access “open data” and to create profiles, this open information appears problematic for several reasons: Its consequences are often not recognized and are also not manageable, and data protection is hardly guaranteed. In addition, research with this data is made possible without a “data donor” ever having given their consent to use the data. It can therefore happen that a person concerned takes part in research and contributes to research goals without actually wanting to do so 3).
For doctors, however, role conflicts can arise. In the best sense of the word, they perform “telemedical” work in social media, the effects of which they cannot control. Your generally applicable information is used by patients in individual situations, and their individual advice is generalized. As a result, doctors lose control of their information. Their expert knowledge can also damage instead of use. When doctors talk to each other about patients, it should be noted that the networking of different information from social media may enable individuals to be identified. This brings the duty of confidentiality or a questionable release from the duty of confidentiality into focus. Collegial criticism of the actions of other doctors,
These problems seem solvable, but they must be discussed transparently and in compliance with the applicable professional, ethical regulations. This also applies to the application of professional law to social media because the telemedical aspects, the problem of confidentiality and collegiality pose professional legal challenges.
Communication via social networks always touches on questions of data protection. This applies above all to medical confidentiality as one of the basic duties of a doctor. Section 9 of the MBO-Ä stipulates that doctors must remain silent about what has been entrusted to them or become known to them in their capacity as doctors – including beyond the patient’s death. Last but not least, the duty of confidentiality also includes the fact that the individual patient is actually the doctor’s patient. The possibility of the disclosure can only arise from the statutory provision or the express or presumed consent of the patient.
Particular caution is therefore required when using social networks. When actively contacting the patient, it should be ensured that third parties do not have any insight into the communication. If the patient agrees and can see the range, communication should be possible. However, the worldwide data transfer and the often unclear location of the storage of such data in countries with different data protection levels make the procedure problematic. The patient’s consent to the revelation also appears difficult. The doctor would have to point this out clearly and also carefully document the consent. Consent should also not presumably be given, as is the case with the use of special doctor software,
As part of the communication, the patients’ wish could be brought to the doctors to answer smaller inquiries. Even though the personal examination and advice as professional treatment are usually owed under civil law from the treatment contract, the legal problem of remote treatment is also important. Exclusive individual medical treatment and advice via print and communication media is prohibited. Even with telemedical procedures, it must be ensured that a doctor treats the patient immediately. Transferred to social media, communication between doctor and patient can become problematic if it leaves the purely administrative framework and specifically serves the purpose of the treatment.
In principle, social media can also be used for advertising purposes. For doctors, however, the special advertising law also applies here, which is particularly strictly regulated in the health sector for patient protection. As a result, advertising via social networks is not prohibited if they are within – otherwise – the given framework. In principle, factual and job-related information is permitted to the doctor; Misleading, promotional or comparative advertising is not permitted.
The German Medical Association (BÄK) recently published a handout for doctors on dealing with social media ( 4 ). This is based on the recommendations of the 115th German Medical Association ( 5 ) and the World Medical Association ( 6 ) and is aimed at newcomers and experienced users. It explains what doctors should pay attention to when using this tool and sets out ten rules for safe use by professional law (box “10 rules”).
Observe medical confidentiality: patient-related information should not be published and, if so, only with the patient’s consent. Even then, confidentiality vis-à-vis the patient must be maintained. It must also not be possible to draw any conclusions about the patient’s identity from the sum of the information available online.
Do not defame colleagues – observe netiquette: Following professional law, the rules for collegial cooperation are also valid in social networks. Unobjective criticism of the method of treatment or the professional knowledge of a doctor, as well as disparaging statements, are unprofessional. Patients must not be defamed either.
Do not exceed the limits of the doctor-patient relationship: The relationship between patient and doctor must remain professional and separate from purely personal relationships. Requests for friendship from patients should be politely declined because online friendships with patients are not regularly established.
Separate professional and private profile from one another: Professional pages and profiles should be set up as far as possible to avoid mixing professional and private interests in advance.
Observe the ban on remote treatment: According to professional law, doctors are prohibited from giving individual therapeutic recommendations exclusively via print and communication media. Answering general health questions are permitted. Basically, it should be pointed out that an online offer cannot replace a consultation with a doctor.
No unprofessional advertising via social media: Promotional, misleading and comparative advertising is prohibited as unprofessional. The statement “Advertising and information technology: Effects on the professional profile of the doctor” by the Central Ethics Committee at the BÄK provides guidance.
Observe data protection and data security: not only in terms of patient protection but also in your own interest, the legal requirements according to the Federal Data Protection Act / State Data Protection Act and recommendations, for example from the Federal Office for Information Security, must be taken into account. The review of the general terms and conditions (GTC) of the provider must be checked for the aspects of data processing, data protection and copyright before use.
Prevent self-disclosure by patients: In contact with patients, they should not be tricked into disclosing personal information and especially health information to prevent abuse.
Reluctance to make product-related statements: statements made must be true according to a factual assertion. Expressions of opinion are possible, but they must not be defamatory since defamatory criticism is no longer covered by the constitutionally protected freedom of expression. Since the boundaries here sometimes blur, the author should be cautious about product-related statements in order not to become the target of injunctive relief.
Check liability insurance: Due to the liability risks described, the doctor using social media should check whether his liability insurance covers them.
Most social media offerings offer the option of making settings for privacy. Whether for private or professional use – users should familiarize themselves with the setting options and have an overview of who can read what and how. Facebook, for example, offers the option of looking at your account from a different user perspective. Many believe that they can protect themselves in social networks with a pseudonym and cannot be found by third parties. The networking among each other and the friends list nevertheless allow conclusions drawn in many cases as to who is hiding behind an account. It is therefore important to be as professional and authentic as possible (box “Safety precautions”).
Many players in the healthcare sector may be familiar with the possibilities of social media from their private environment. Still, they do not know how and for what they can and are allowed to use this media. Out of uncertainty and in order not to make mistakes, they avoid the new techniques. This is a mistake, however, because doctors and other health professionals must participate and steer developments for the benefit of patients. To do this, they must know and master the techniques. In addition to guidelines and recommendations, practical training is therefore important.
At the University Medical Center Mainz, the AG eHealth of the Institute for Medical Biometry, Epidemiology and Computer Science has developed various courses as part of internal university funding for innovative teaching. In October 2013, a one-day workshop on “Communication between doctors and patients – how new media pose new challenges” was successfully offered nationwide for the first time to medical students. The teaching concepts, which are also being developed as part of a doctoral thesis at the institute there, have been expanded to include other target groups. At the beginning of 2014, two nursing courses were offered through the advanced training program of the Mainz University Medical Center. The offers are to be further expanded and offered at other locations, such as the Hannover Medical School.
Outlook and conclusion
Social media will change and potentially improve the interaction and communication between everyone involved. A greater reach with simple means (including a targeted transfer of information) is possible. The knowledge of patients is made easier to use and visible. Social media will not only help generate new information but also ensure that the wheat is separated from the chaff. Networking among all actors is becoming increasingly important. Personal recommendations from your own network will gain importance, for example, when looking for a new doctor. The health sector must consider the potential dangers in this progressive networking and, if necessary, develops suitable solutions for identified problems or ensures that appropriate alternatives are promoted.
Compared to clinics or doctors, other institutions in the health sector are much further ahead. One example is the German Bone Marrow Donor File (DKMS): To reach new target groups, the DKMS has been on Facebook for a long time. So-called communication teams keep in contact via Facebook with potential donors and those who have been typed. The “followers” are informed about campaigns, receive book tips and find out firsthand how transplant recipients have fared. The topic of bone marrow donation becomes personal and “gets a face”.
Society is moving towards the preferred exchange of digital information via social media. Doctors and other members of the health professions must not ignore this trend not to miss the boat and experience a “communication deficit”. Dealing with the topic is important because it creates new ways of exchanging information with the potential for the healthcare sector. If you follow simple rules, nothing stands in the way of use. Help with questions can also be obtained from the responsible state medical association.