Duke Medical Ethics
Transparency, Trust, and the Doctor-Patient Relationship
Although patient data is often reduced to mere numbers on a screen, such information can be highly personal and sensitive to the respective parties. Confidentiality in medicine serves to maintain patient privacy, prevent shame or vulnerability, and foster an environment for honest communication between the doctor and patient.
The nature of a medical encounter can often make the patient feel vulnerable and ashamed about being in the doctor’s office. Many times, their visit has to do with socially embarrassing concerns regarding family members, domestic violence, or pressures at work, to name a few. Thus, what doctors do and how they interact with the patient influences the likelihood of expression of patient agendas. In order for them to reveal these private details, doctors must listen actively to the patient's story, seeking and noticing evidence for both physical illness and emotional distress. As a rule, physicians should address ICE: ideas, concerns, and expectations. These factors are instrumental for the treatment regimen as the patient doctor relationship humanizes the connection between the two individuals, allowing for the patient to open up the doctor in the process.
Respecting patient confidentiality fosters two-way trust between doctor and patient and addresses the inherent imbalance of power. By openly accepting the patient’s motives for visiting , doctors give some control back to the patient. As a result, patients are more likely to accept medical advice and share with the doctor all the facts needed for good care. Fear of judgement may conceal unrepresented social and emotional agendas; leading to major misunderstandings, unwanted prescriptions, and non-adherence to treatment. It can be therapeutic for the patient to take off their public mask and tell the doctor of any insecurities or anxieties without fear of judgement, enabling the formation of a stable and long-term doctor-patient relationship.
The obligation to keep patient information confidential is linked to respect for patient autonomy, the right to self-determination about our bodies and how they are treated, as well as the right to control information about ourselves, our lifestyles, and our health (O’Brien J, Chantler 2013). The rights of the individual give the patient the ability to manage his or her private information, which extends to the ability to exercise control over his or her life. As the Medical Research Council states, “Keeping control over facts about one’s self can have an important role in a person’s sense of security, freedom of action, and self-respect.” (Medical Research Council, 2010) Indeed, privacy provides patients with a sense of self and a sense of identity.
Doctors not only have an ethical responsibility, but a legal obligation to maintain confidentiality. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) ensures data privacy and security provisions for safeguarding medical information. As a note, in order to give effective treatments, doctors may share the patient’s medical records with other healthcare professionals, but such information is non-identifiable. This is typically not referred to as a breach of confidentiality; instead, confidentiality is regarded in terms of information being shared outside the clinical team.
Disclosure of patient information to solicitors is acceptable after gaining patient consent. This allows insurance companies, employers, and those involved in legal proceedings to request information about patients, but clinical research studies can also use personal data about patients in analyzing certain disease treatments, drug designs, and behavioural studies. An emerging issue in healthcare is the failure of obtaining informed consent from patients for the release of this information. This could be due to certain disabilities or circumstances that prevent the patient from understanding what is being asked of them, or a lack on the part of the solicitor in allocating adequate time to acquire informed consent. Whatever the reason, care should be taken to ensure that the information is being presented in an accessible way so that the patient fully understands, even if it requires additional efforts. The physician should also look for a clear and unambiguous signal from the patient if they do consent and reiterate these desires back to the patient for confirmation.
In many cases, patients are uncomfortable with releasing medical information. Major concerns about information disclosure are usually rooted in concerns about the entity receiving the information, the sensitivity of the data, and the group or individual that controls access. Patients fear that employers and insurance companies will obtain that information and use it against them. In either case, patients want to feel involved in both their care and decisions about research. With the option to decide whether to donate their information to a clinical research study, patients gain an opportunity to feel they are benefitting future generations.
Confidentiality is not absolute, and the best action is not always clear cut. There needs to be a balance between confidentiality rights and “duties to protect and promote the health and welfare of patients who may be unable to protect themselves,” as stated by the General Medical Council. However, a physician has a legal obligation to breach confidentiality when it falls under the mandatory notification of infectious diseases to public health authorities, the mandatory of child abuse, or under a court mandated request.
This request is done in the prevention, detection, or prosecution of serious crime and so that it doesn’t expose others to risk of death or serious harm. As Law and Bioethics Professor Johns Harris states, “One person’s autonomy ends where another person’s autonomy begins” (O’Brien, 2003). For example, the physician can disclose to authorities if a patient not fit to drive continues to do so even after being advised that it is no longer safe to do so. Alternatively, there can be signs of domestic abuse or indications that the patient is planning on doing causing harm to themselves or others. In both cases, the patient’s actions are putting others at risk, and the physician can no longer remain as a passive observer.
There are a variety of things that the physician must consider when deciding whether or not they will disclose patient information. The first is the potential harm or distress that such a disclosure may bring to the patient in terms of their future engagement with treatment and their overall health. Second is to maintain the public’s trust in the health care system—unnecessary disclosure may tarnish public perception of the healthcare system. Third is the potential harm brought to society if the information is withheld. In cases where the number and age of historical records makes it impractical or impossible to seek and obtain consent, the interests of society in using such records for research outweighs the rights of the individual. Over the long term, confidentiality has the practical benefit of improving the health of both the public and the individual.
There is a growing market for confidential patient information, as personalized marketing becomes more profitable and companies seek to better understand consumer behaviour trends. However, in order to maintain patient trust in the effectiveness of the health care system, health care providers must uphold laws protecting patient confidentiality. This entails not divulging such personal details to solicitors without informed consent unless said information poses a risk to the patient or others and there are no better alternatives. In consideration of future medical practice, there are many approaches to supporting clinical research while maintaining patient trust. One way is to change the system of consent to standardize open information such that patient must opt out of having their records shared instead of having to opt in to sharing information with outside parties. Additionally, patients should have total access to health care notes kept on record about them. This transparency will further build trust between physicians and their patients, making a visit to the doctor’s office a more pleasant experience.
This article was written by Amy Pei of Johns Hopkins University. References and acknowledgements can be found in our journal, under "Current Issue."