Due to enhanced means and possibilities to acquire data about treatments and diseases that are closely associated with the development of internet and social media technologies, patients are becoming knowledgeable and their need to be involved in their care is increasing. Social media are technologies and digital media that allow users to share information and generate media information in community with others or individually. The media is growing and is used as a tool for sharing and gathering information, supporting communication and social networking concerning topics of health, supporting processes of healthcare, and bringing individuals together. Its support in such a manner promotes patient empowerment allowing them to manage their healthcare needs. Internet evolvement from a technical and limited resource, to the current dynamic web 2.0 where individuals have the ability to exchange information means many individuals with an enduring condition are now exposing their personal health details into the public realm such as social network sites, videos, discussion boards and virtual environments.
Through Use of mobile and web technologies and social media patients can be able to communicate with others, manage their diseases and be closely monitored (Desai, Ndukwu & Mitchell, 2015). Besides, through these technologies, researchers can recruit patients for medical analysis or study drug effectiveness. Nevertheless, limited security and privacy, and low communication hurdles in social media results to problems from an ethical viewpoint. Ethics is a discipline that handles the bad and good and moral obligations and duty. Public health ethics handle particular moral questions concerning public actions for life elongation, disease prevention, or physical and psychological well-being. On the contrary, medical ethics focuses on the relationship between doctors and patients. The problem of how ethical standards may be employed to online health analysis is an existing challenge for health professionals, researchers, and patients. The paper discusses the ethical issues to be examined before exploiting social media in contexts of healthcare.
The evolution of mobile and web technologies and social media has brought many problems such as limited security, privacy and challenges in communication. As such, it has led to emergence of numerous ethical issues associated with the use of social media. Currently, there are no policies and regulations that address these emerging issues and thus, there is the need to come up with a framework that will be able to handle such issues.
The aim of the context is to investigate the ethical implications associated with social media usage in healthcare. The following are some of the use cases selected from various analysis and research work about the utilization of various social media channels for health purposes:
The youth frequently get involved with new social media where they share their personal details. Youth is described as a period of transition from childhood dependence to independence of adulthood. Besides, it is a stage where one’s identity is created, depending on both social environment and individualities. For Youths, online social networking sites is a place for identity examination, a place to express sexual identities, problems, ideas, feelings, and a space for interaction. Many digital native generation use online social media find information regarding health-related issues. As such, social media is a valuable place to enroll youth participants to take part in research. For instance, enrolling participants from Twitter and Facebook is an efficient strategy of recruitment in research studies related to youths (GOYAL, 2012). However, recruiting youths using social media presents several ethical issues that require considerations.
Acquiring reliable consent from youths through social networking sites represents several concerns. It is challenging to acquire parental consent from those interested or contacted under the age of 18 years through social media. In fact, it is unethical to circulate a study advertising material in social networking sites to under-aged individuals without first circulating it to the cognitive maturity who decide whether to engage in the research or not. A more ethical way to recruit the digital native generation is to target the parents first instead of children. Nevertheless, it is essential to acknowledge that social media policy settings regularly change. When attempting to reach young individuals via social networking sites for public health monitoring or public health education, the same privacy and confidentiality that are used offline should also be employed online.
Although, social networking sites are used for interaction, some teenagers participating in health matters hide their personal health details on social media (Wilson, Fornasier & White, 2010). For them, social media is a place for regular youths and not a place to discuss their treatment and diagnosis. Actually, they do not use social media to communicate with individuals who have same conditions as them. Utilizing social media as an intervention for health matters need to carefully consider privacy concerns of participants (Kim & Lee, 2014). Privacy of young people and comfort concern regarding matters of health should be preserved and respected in the setting of social media.
In the traditional sense, patient-doctor relationship involves direct communication between the doctor and the patient regarding treatment options. Details about therapies, diseases and medications is shared. Occasionally, administrational issues such as making appointments are clarified. The characteristics of such a communication are medical trust, confidentiality and privacy. Information is believed to be securely stored in the record of patient, safeguarded by law and cannot be viewed by others. With the evolution of internet technologies, monitoring and communication in healthcare is beginning to be conducted through social networking sites (Rozenblum & Bates, 2013). Health examination outcome and information can be shared by email and appointments can be booked online.
Social media can be used to boost the relationship between a doctor and a patient, leading to improved patient care. Nevertheless, such a communication through the internet is affected with several ethical issues because technologies affect information security and privacy. Instructions concerning communications between a patient and a doctor mainly address communication via email, and data sharing via websites, and concern unpermitted computers’ access, privacy risks, confidentiality, or reliable consent.
The relationship between a doctor and a patient may be impacted in two main ways. First, patients may be allowed to access personal details of a doctor as it is offered on the internet. To solve such an issue, it is recommended when using social media, doctors should adopt privacy settings to protect personal content and information, or separate their private sectors from professional areas (Hewitt-Taylor & Bond, 2012). Nevertheless, they should acknowledge that privacy setting is imperfect and after getting connected to the internet, information is likely to remain permanent. It is essential for doctors and other professionals of healthcare to acquire more knowledge on provisions of privacy for various applications of social media and change the settings to make sure the information is clearly safeguarded.
Secondly, doctors may access online information of the patient that may be unavailable in the healthcare setting (for instance, patients lifestyle details shared on a personal blog). Such patient information acquired from online sources may be useful in specific healthcare settings. However, doctors should be mindful on the way the content was posted publicly. They should employ their medical judgment to determine how and whether to disclose such details during patient’s treatment. Monitoring patients personal behavior such as whether they are taking healthy meals or have stopped smoking, may affect the trust required for a strong relationship between a doctor and a patient and may impact the patient treatment (Steijn & Schouten, 2013). Therefore, doctors must cautiously maintain professional confidentiality and relationship in online platforms. Emails and other online methods of communications may be added but should be used in place of one-on-one encounters.
Through crowdsourcing, patients can enquire different opinions regarding a treatment or diagnosis of a clinical condition. The crowd wisdom provides opportunity to look for medical recommendations from other clinicians or patients across the globe through channels of social media such as Twitter, Patients Like Me, Facebook, HealthBoards and CrowdMed. Crowhealth is define as the use of social media to inquire information from an extensive number of individuals on a diagnosis and treatment, or for a general health recommendation that is new to healthcare (Seidenwurm, 2018). With evolution of CrowdHealth, different issues connected to health data privacy have emerged and require comprehensive examination since the existing understanding of confidentiality and privacy is being challenged.
Currently, individuals are exchanging their sensitive and general health details online seeking advice from virtual community members (Cole, Watkins & Kleine, 2016). They openly share details connected to mental, behavioral and genetic health content. Besides, they publicly identify themselves by exposing their photo, name and location when looking for confidential health content via online sharing. There are no existing legislation of healthcare privacy that restricts people from sharing their health details online. The only established privacy laws are those that safeguard the healthcare information of a person from organizations.
The healthcare privacy issue becomes nebulous when a parent shares the health details of their child together with photos to a public audience. An operater must acquire valid consent from the parents of the child before using, collecting or revealing child personal information.
If issues of consent and how the details was shared is unclear, then the privacy of child’s health information cannot be guaranteed. The ethical issues associated with sharing health data in Crowdhealth channels are challenging the outlook of healthcare privacy (McKee, 2013). There are several ethical issues connected to how data is exchanged, how consent is acquired, use of data for commercial use or research, posting child’s information by parents, and the verification of the user and the content they share.
If social media tools are going to be used consistently in healthcare settings, social media integration in medical sectors as a source of health data should be considered. It is providing different opportunities for health data access and for the creation of challenges of new research. There exist an open discussion regarding the application of social media as a tool that involves professionals and patients in healthcare, how health data is posted and exchanged in these channels, ways of managing social media in the medical information environment context, and the expected benefits acquired after incorporating the information in the records of patients. The integration consist of the details offered by patients and communications among professionals.
With individuals constantly getting involved in their care and taking into consideration the experiences of the patient, the concept of developing a detailed health records of a patient including information acquired from social media and allowing the healthcare team to access the information gains interest. The basis of every relationship between a doctor and a patient is privacy. Safeguarding and protecting personal health information is legal requirement under various laws such as HIPAA (Health Information Portability and Accountability Act), and an ethical imperative.
As such, it is recommended that such laws be employed to social media communications. Health organizations and providers will need to reconsider how to secure and collect the information created in social media tools when incorporating them in an EHR and clinical environment. Besides, patients should be taught on what type of data is secured as personal health data. Additionally, enhancements in confidentiality and privacy will be vital to nurture the application of social media, and more knowledge is required to identify its real medical application.
Although social media usage for health reasons and its encompassment in EHR is experiencing various unaddressed questions, it is important to abide by the same standards of ethical and quality issues that describe health professions. There are many problems that need solving, which influences aspects connected to legal and ethical issues, information management and operational aspects. It is essential to determine the kind of information associated with social media to be included as a health information piece in a patient record, clearly develop control mechanisms and the manner in which the components connected to social media are function integrated in an environment of EHR, defining the application of policies used in the social media data context. The proper application of social media platforms for health reasons requires that health services and organizations offer patients with simple and clear advices on the usage of social media channels when communicating with health specialists and concurrently, health specialists will benefit from particular training in suing channels of social media both at professional and undergraduate activity levels.
In order to address the ethical issues caused by use of social media in the health sector that have been identified above, the following framework can be adopted. The framework has been broken down into a series of steps; they include:
Step 1: First, collect all the relevant facts and determine the problem caused by the ethical issue. If some assumptions had been set out, replace them with the facts that have been gathered (Bott, 2008). Additionally, evaluate the findings to see if it is actually a problem and seek help from professionals if necessary.
Step 2: Identify the parties that have been affected which include organizations, individuals, and key stakeholders. At this stage, seek to find out how the parties involved have been affected, identify any conflicts, and determine your allies.
Step 3: Involved ethical issues should be considered and referring them to the code of ethics that have been stipulated within the institution. Determine the organizations, professional, and personal ethics issues and find out if these issues influence the reputation of the affected parties (McKee, 2013).
Step 4: find out the affected fundamental principles: identify the compliance threats to fundamental principles such as objectivity, integrity, confidentiality, professional competence and behavior, advocacy, self-interest and review, intimidation, familiarity, work environment, regulation and legislation, profession, and individual.
Step 5: Adopt the internal procedures of the institution by determining if the institution have procedures and policies to offer guidance in situation related to ethical issues in social media. Identify the ways to escalate such issues within the organization and the people who should be involve, their roles, and at what stage (Sharma, 2016). Find the whistleblowing procedures that the institution has in place and if necessary seek external guidance.
Step 6: identify and evaluate alternative solution by considering the policies, guidelines, and policies of the organization. Apply regulations, laws, and universal principles and values acceptable within the society (Grobler & Dhai, 2016). Test the proposed solutions to see if it is applicable to the ethical issues involved and if the same action can be employed again in similar cases.
Step 7: the course of action is implemented and monitored. Also, it is recommended to document all the procedures taken which will be used to justify the course of action in future.
By clearly understanding all of the above steps of the proposed framework, healthcare teams can successfully integrate ethics in their institutions. The suggested framework for addressing ethical problems in social media usage lay out the essential steps that should be embraced by healthcare practitioners for a detailed assessment of ethical considerations. Besides, the framework may be used by evaluators, researchers or decision-makers to examine the process applied for an ethical assessment or for educational reasons, particularly to demonstrate the flow of functions required for the assessment of ethical considerations. The proposed framework may benefit healthcare institutions for the following reasons:
First, the suggested framework is based on key functional features of current ethical guidelines for healthcare and technical demands and practical concerns of potential user. It acknowledges that ethical assessments might not be attempted or be discounted in some healthcare firms because they are believed to consume resource, are unfeasible, or impractical. As such, the framework supports strategic resource planning, proper scoping and empower institutional capacity.
Secondly, the suggested framework purposes to promote a more structured and systematic method of integrating ethics into healthcare institutions by aligning complex ethical assessment process and pointing out its key steps. It is simple and applies concepts and terms that are well-known by majority of healthcare practitioners, including those with insufficient knowledge on ethical assessments. The stepwise guide assist the healthcare practitioners to understand the evaluation assessment nature. The framework can be applied in training of healthcare professionals and can play a role in integrating current assessment approaches across healthcare firms.
Thirdly, the proposed framework support the changing connection between policy, social media evaluation, and community by nurturing the integration of public and stakeholder input in to the process of ethical assessment. Besides, it promotes a comprehensive approach to assessment and emphasizes that ethical issues need to be perceived in interrelationship with economic, legal, clinical and social issues, and that these connections need a proper collaboration between the team members operating in various domains of healthcare. Another essential stepwise guide aspect is its adaptability. The framework users are provided the possibility to select the task suitable to their evaluations or to modify the process of evaluation to fit their needs.
Despite of its strengths, the suggested framework is associated with some limitations. First, to utilize the framework, healthcare institutions may need expertise, information, data and other resource that may be unavailable. Shareholder input, qualitative proof and normative assumptions are normally needed to solve ethics-related issues. The framework fails to comprehensive address the methods in which ethical information should be handled or point out how the process of evaluation should be employed in various contexts. Besides, the verification of the suggested framework was not conducted.
When adopting any new framework or methodology, they are faced with numerous challenges. There are several ethical, professional, and technical challenges. Most IT professional have insufficient knowledge when it comes to relating social issues to technical solutions. This is a major challenge in devising the most reliable framework (Denecke, et al., 2015). Additionally, since the framework has never been applied, the challenge that it is likely to face is acceptance. Many people tend to reject new solutions. It should be acceptable within the society, therefore, determining all the needs of the society. Finally, there are no regulations, laws, and policies that have been laid out to guide in proposing the different frameworks and methodologies (Relkin, 2016). As such, it is a challenge to propose a fully acceptable framework.
It is important to consider all the ethical challenges caused by social media in any industry. The following key issued are recommended to be acknowledged when employing the use of social media in health sector;
Having these recommendations in mind will ensure that each research is evaluated based on the merits considered in conducting the research. Additionally, it is necessary to individualize the recommendations accordingly.
Conclusion
The increased use of social media in health care research has led to emergence of professional and ethical risks and issues which are essential in social media research that should be addressed and evaluated carefully especially on privacy, confidentiality, and consent. Despite these ethical issues presenting numerous challenges to the health institutions, there are no regulations and guidelines that have been issued to mitigate these rising ethical issues. This research has proposed 4 recommendations listed above to be considered while conducting any research related to social media and health care.
It can be concluded that the users of social media have been subjected to social media ethical challenges which with or without their knowledge, their information is never secured as there is no guarantee of such. It is important for more legislations be put in place to protect the consumer and other users. The findings show a large vacuum in user protection and an urgent need in evaluation of the existing international laws or even a country can define their own laws for the protection of its citizens just like in the US. The findings on the content and information insecurity possess a great intellectual property breach.
References
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Denecke, K., Bamidis, P., Bond, C., Gabarron, E., Househ, M., & Lau, A. et al. (2015). Ethical Issues of Social Media Usage in Healthcare. IMIA Yearbook, 10(1), 137-147. doi: 10.15265/iy-2015-001
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