Beep… beep. Beep…beep…beep! Multiple text and WhatsApp notifications all from the same unfamiliar source.
It is late, so I frown with more than a little irritation at my phone, wondering what the notifications are for. A cursory glance through the messages appearing on my phone deepens my frown even further. ‘Marketers…’ I spit out in my mind, about to dismiss the message and block the number. Something holds me back a little longer though. That name is familiar, the sender of the offending broadcast message isn’t just some random marketer. I remember that name from my last visit to the clinic. They had, with our permission given a short sales pitch about a product they were selling, but I certainly had not shared my phone number, name or any details about my medical history with the representatives from that organization. How on earth did they get all these details about me? Realisation dawns. Ehn?! I know those nurses did not give out my medical records to a third party!
Armed with full knowledge of the newly launched Patients’ Bill of Rights, I call my healthcare provider to remind them of my rights as a patient and how their negligence had violated my ‘Right to privacy and confidentiality of medical records.’
With many apologies and promises that the event will never happen again, they disclosed to me how the representative from that organisation must have cunningly obtained my personal details from my medical records, which might have been in use by the medical practitioners at the clinic. To my pleasant surprise however, the next time I visited the clinic, I noticed that sheets containing patients’ medical records were kept with much more care and attention than was previously the case.
What is the Patients’ Bill of Rights and can it help amplify the voice of patients and protect their rights when they seek health care in Nigeria? The idea of patient’s rights saw its origin in 1948 when the Universal Declaration of Human Rights was formalized. This recognised the dignity of patients and their right to be treated as a human being, as well as recognising the duty of care owed to them by medical practitioners and the state. A patient’s bill of rights is a “list of guarantees for those receiving medical care. It may take the form of a law or a non-binding declaration”.
At the launch of the PBoR in Abuja, Vice President Yemi Osinbajo stated that “the bill borders on human rights and respect for human dignity, as one can tell a great deal about how a country values its citizens from its healthcare institutions and this is the responsibility of not only healthcare practitioners but the entire healthcare value chain”.
The PBoR, although newly launched is not a new concept, it is merely an aggregation of Patients’ Rights by the CPC that are enshrined in the constitution, and covered by the Consumer Protection Council Act, Freedom of Information Act, National Health Act, the Hippocratic Oath amongst others.
The Bill of Rights outlined 12 rights that patients are entitled to;
- Right to relevant information in a language and manner the patient understands including diagnosis, treatment, other procedures and possible outcomes.
- Right to timely access to detailed and accurate medical records and available services.
- Right to transparent billing and full disclosure of any costs, including recommended treatment plans.
- Right to privacy, and confidentiality of medical records.
- Right to clean, safe, and secure healthcare environments.
- Right to be treated with respect, regardless of gender, race, religion, ethnicity, allegations of crime, disability or economic circumstances.
- Right to receive urgent, immediate and sufficient intervention and care, in the event of an emergency.
- Right to reasonable visitation in accordance with prevailing rules and regulations.
- Right to decline care, subject to prevailing laws and upon full disclosure of the consequences of such a decision.
- Right to decline or consent to participation in medical research, experimental procedures or clinical trials.
- Right to quality care in accordance to prevailing standards.
- Right to complain and express dissatisfaction regarding services received.
Aggregating and summarising the bill for the benefit of patients is crucial to ensure that there is no ambiguity in patient knowledge, when it comes to their rights as patients. For Prof Osinbajo, it is a matter of value for money; as demand increases for better health financing, service delivery must also increase commensurately. In his words, the Nigerian Patients’ Bill of Rights “is a very timely complement to policy and funding interventions. It will ensure that the increasing funding for healthcare in Nigeria translates into the direct improvement in the quality of the final output, at what one might call the ‘last mile’ phase of healthcare delivery, the very personal arena of interaction between health personnel and the beneficiaries of the healthcare”.
The PBoR, while highly applaudable is still in the infant stage of implementation and will require committed efforts from patients and policymakers alike to make it work. A few issues however will need to be resolved;
- If or where patients feel their patient rights have been violated, where and how can they seek recourse?
- What kinds of sanctions will health service providers face for violating a patient’s right ?- this has not been made clear
- Are medical practitioners obligated to display the Patients’ Bill of Rights in their facilities?
- Who is responsible for communicating the Patient’s Bill of Rights to patients (in a language/format that they understand)?
Hopefully, as implementation gets into place, all these issues should be resolved. A more structured system of action and consequences will lead to a health service standard worthy of emulation, by ensuring strict compliance and the enforcement of the Patients’ Bill of Rights.
Knowledge of the PBoR and what rights it confers on patients, requires boldness to confront the practices of medical institutions, in order to drive change. Ultimately, it is the patient’s understanding of their rights and their ability to follow through if they feel their rights have been infringed. Should this happen, let us not forget that engaging the services of legal experts comes at a financial cost that many may not be able to afford. However, the bill could also be a game changer in healthcare service delivery, improving accountability and quality of care. We must hold ourselves – professionals and patients – accountable to the rights that this document enunciates.
The PBoR has been provided to cater for the needs of every Nigerian, it is our responsibility to remind health service providers of these rights and demand redress when our rights are violated. Patients now have a voice and must use it to drive accountability and excellence in the health sector.
Please leave a comment below. Having reviewed the summary of the Patients’ Bill of Rights, do you feel you are now empowered to demand better healthcare from medical practitioners or do you feel this is just another “bill” that on paper sounds great, but given the current challenges in our health sector, it may prove difficult to implement? We would like to know your thoughts.
Patients’ Bill of Rights (PBoR) is a great move in the right direction. However, the key to success includes effective implementation, regulatory enforcement, and accountability.
One of the central tenants of all privacy principles is the acknowledgment that privacy works best when the affected individuals are active and involved in the use of their data (Murphy, 2015). Therefore, it is ethical to explain to covered entities, how their protected health information (PHI) may be used and disclosed. Also, it is part of a healthcare organization’s duty to protect health information privacy which includes the right to view information on hand, file complaint with the Regulatory Body if a violation is suspected, and the right to request an amendment to the record if it is incorrect. Inappropriate use of patient information is addressed by the collection limitation principle, which states that data should be collected by fair and lawful means and that, when necessary, notice should be given to the individual or their consent obtained.
Confidentiality, integrity, and availability create information security. Where these are lacking, patients may be reluctant to share medical information and symptoms with providers; in some cases, defer treatment for fear of losing their privacy. Patients who fear their healthcare provider might disclose or lose their information outside of the allowable disclosures fear embarrassment and may withhold information from their provider.
A master patient index (MPI) is a database used across a healthcare organization to maintain consistent, accurate and current demographic and essential medical data on the patients seen and managed within the nation’s / organization’s various departments. It can index patients, persons, healthcare plan members, subscribers, physicians, healthcare practitioners, payers, employees, and employers. This database can be referred to as the enterprise master patient index (EMPI) if shared by two or more care centers. Because patients are indexed by their respective unique identifiers, their information can easily be retrieved regardless of format or location.
Finally, none of the above-mentioned processes will be effective without patient engagement, staff training, and quality assurance (QA).
Obi Egbuniwe, CPHIMS
Ambassador, University of New England Online Health Informatics Program
Twitter Handle: https://twitter.com/obiora1
The document as good as it would appear for the patient left some questions unanswered. For instance, if a patient is entitled to care in emergency situations, how does the care giver get paid in case of private hospitals that offer such services or is the PBoR meant for only govt establishments.
That’s the question, you always hear the government shout patients should be given immediate emergency care, but they never mention who pays.
You ask an important question and we would hope that as the PBor moves into implementation, a lot of the questions being asked will be clarified. The assumption though is that a patient is a patient, whether in a government facility or private healthcare facility. As such, they should be entitled to the same rights. We would welcome further comments and views on this. It would be good to also hear views from the Nigerian Bar Association on this issue.
This Bill, (PBoR), if properly implemented , will surely improve the quality of health care service delivery in Nigeria. I’m also happy that grey areas, should the bill be fully implemented have also been highlighted. But in an event that sanctions are for erring health care givers are outlined, we should take into cognizance the caregiver:Patient ratio, as the quality of care might differ from one patient to the other depending on what time of the day they are seen.
I pray that the new PBoR will not be another paper work. May God help our political leaders and health practitioners to actually implement it.
The PBoR is a great weapon to drive accountability and excellence in the Nigerian Health industry. My desire and prayer is that, may the press and the media support this laudable bill with the right attitude to educate the masses and not politicized the information for the benefit of the few.. . . Food for thought.
For patients’ bill of right to be made feasible and achievable I think health insurance should be made a fundamental human right in Nigeria and more so their should also be Medics bill of right so we can have a balanced environment to thrive on