– “Presently, we have not fined any institution or practitioner for infringements on patients’ rights”, says Barr. Olufemi Daniels, Lead, Regulations Monitoring and Compliance at NITDA.
Perched on a brick by the corridor of the General Outpatient Department (GOPD) of the Lagos State University Teaching Hospital (LASUTH), Khadijat cut a dejected figure. X-ray result in hand, she waited nervously for her turn to be called upon to see the doctor.
Other patients seated in the poorly-lit consulting area wore the same forlorn look as Khadijat. One could have easily mistaken them for a bunch of refugees, waiting for their daily ration of an unappealing meal.
The housekeeper tidying up the GOPD area seemed to share this “refugee” view of the waiting patients, as she busily dusted the walls and brushed cobwebs from the ceiling, sending particles all over the place. The patients’ presence did not matter; they were more or less like unwelcome guests.
So congested was the consulting area that a nursing mother, whose baby wouldn’t stop screaming from discomfort, could get no convenient place to sit to feed the physically-challenged infant.
At the nearby Medical Emergency section, the situation was the same. Anxious relatives of patients could be seen sitting on drainage culverts, while waiting for news concerning their loved ones.
When Pharmanewsonline spoke with Khadijat, a petty trader from Agege, she revealed that she had been referred from the Orile-Agege General Hospital in early 2021 to see a consultant at LASUTH. According to her, since then, each appointment had come with its peculiar challenges.
Khadijat disclosed that on one of her appointments, she was denied her right to clarification of information on her condition. She revealed how the consultant gave her a prescription without responding to her questions on the purpose of the medication.
Ironically, it turned out that the medic himself had been mistaken.
According to Khadijat, “On getting to the pharmacy, I was told that was not the right dosage for me; so I was sent back to the consultant, who later realised his error and corrected the prescription.”
Sadly, Khadijat’s experience is one out of several cases of outright violation of patients’ rights digitally and offline, as revealed by Pharmanewsonline investigations.
Indeed, a survey conducted by our reporter in Lagos and Delta States showed that majority of Nigerian patients are ignorant of their rights, as enshrined in the Nigerian Data Protection Regulation (NDPR) and the Patients’ Bill of Rights (PBoR).
Apparently aware of this widespread ignorance, many healthcare workers treat patients with disregard, either during physical consultations or in handling of their personal data.
For instance, Mr Ola, an HIV patient of the Nigerian Institute of Medical Research (NIMR) Yaba, told Pharmanewsonline, how he believed his sensitive personal data was shared with third parties without his consent.
He said he was bewildered when he started receiving direct advertisements on medications pertaining to his condition from two pharmaceutical companies on his phone.
According to Mr Ola, he had initially been excited about the “timely and precise” information he was receiving from the companies, until the implications of the situation dawned on him.
His words: “Since I was diagnosed of HIV in February 2015, I have always been conscious of whom I discuss the issue with because I hate discrimination with passion. Aside from my immediate family members and healthcare givers, I didn’t tell anyone else about the illness I’m managing.
“Then the bubble burst sometime in July 2021, when I started receiving direct pharmaceutical advertisements on my phone. I felt so bad. How did these people know I am living with HIV, without a connection from my healthcare provider?
“Honestly this has impacted my feelings towards health workers negatively a great deal.”
The National Diploma in Business Administration holder further disclosed that, while he would have loved to get the perpetrator of the confidentiality breach prosecuted, he is frustrated by the fact that he cannot determine the exact point at which the violation occurred.
Ola, who revealed that his caregivers are his prime suspects, said he had expressed his grievances to his doctor but nothing had come out of the move.
In reaction to Ola’s claim, however, the Director of Research, NIMR, Professor Oliver Ezechi, who spoke with our correspondent on behalf of the Director General, NIMR, Professor Babatunde Salako, said the institution adheres to medical and research ethics in safeguarding patients’ data.
Ezechi further noted that even the institute’s periodic reports to the Federal Ministry of Health are encrypted to prevent any leakage.
According to him, “At the Nigerian Institute of Medical Research, Lagos, we keep to the ethics of medical and research practices by ensuring strict patient confidentiality and data security. We do not give out patients’ information to a third party.
“When we send our periodic reports to the Federal Ministry of health, the data we send are purely programmatic and do not include patients’ identifiers like names and addresses. The de-identified data are further encrypted to further enhance security and confidentiality.”
Ezechi also added that the institute conducts regular staff training to keep staff abreast of issues pertaining to patients’ confidentiality and data security.
Aversion to Questions
For Alhaja Kaosarat, a diabetic, who resides in the Igbogbo area of Ikorodu, Lagos, her major grouse with caregivers at the General Hospital Ikorodu is their persistent refusal to entertain or answer questions regarding her condition.
The elderly woman in her fifties, who spoke to Pharmanewsonline during our correspondent’s visit to the hospital, noted that some of the doctors usually turn down questions from patients.
She said this could be due to pressure of work.
According to her, “Doctors are usually too busy on clinic days to attend to our questions. They will just ask, ‘Any compliant?’ ‘Where are your drugs?’ ‘When last did you change your drugs?’ And this is all. Most of them won’t give you time to ask them other questions relating to your condition, as they will be in haste to call the next patient. We need the government to help us appeal to doctors to be paying attention to our questions.”
Philomena, a nursing mother, who uses Central Hospital Sapele, Delta State, told our reporter that the commonest rights violation she experienced was rudeness in communication by nurses.
Citing a particular example, the National Diploma holder in Public Administration explained how a nurse “thoroughly embarrassed” her simply because she couldn’t meet up with the appointment date for her child.
She narrated: “As I tried to explain what happened that I couldn’t meet up with that date, the nurse didn’t even give me the benefit of the doubt. She started using all sorts of words on me, saying I was an uncaring mother who abandoned the health of her baby for naira and kobo; and she asked why I even bothered to come at all, bla bla bla.”
Philomena further stated that such gross disrespect towards patients is rampant among nurses, with some yelling at patients, especially pregnant and nursing mothers, in their clinics.
She also mentioned that she had never heard anyone enlightening patients on their rights at the facility, as the health workers seemed more interested in ensuring patients’ strict adherence to the rules of the hospital, whether suitable or not.
“I have never heard anything about patients’ rights in this hospital. And I see why they don’t want us to know – so that we cannot demand for it.
“But since respect is reciprocal – it is give and take – if they continue without respecting patients’ rights, it will get to a time patients will fight back. So the earlier they start teaching us our rights, the better for us all,” she stated.
Implementation and Compliance
Pharmanewsonline’s investigations revealed that the NDPR and PBoR are well established and implemented to a certain degree at federal health institutions, compared to states health facilities, where there is little or no sign of their implementation.
Our visits to Federal Medical Centre (FMC), Ebute-Metta, Lagos State, and Federal Medical Centre (FMC), Asaba, Delta State, showed that patients were acquainted with their rights, especially as the PBoR policy was conspicuously displayed at the reception for all patients to see. While the NDPR was not overtly displayed, we observed some levels of compliance.
A male orthopaedic patient at the FMC, Ebute-Metta, Mr Kunle Adebayo, disclosed to our correspondent that he had not experienced any case of rights infringement or abuse by health workers at the hospital.
Adebayo, whose left leg was on POP due to a motorbike accident, further narrated how he had been enjoying the cooperation of the healthcare workers, saying they had been of good assistance to him during each visit.
Mr Vincent Okumagba’s remarks concerning the attitudes of health workers at FMC, Asaba, were similar to those of Adebayo. He, however, noted that he could not vouch for the housekeepers and record officers, as they sometimes “pry into” patients’ affairs unnecessarily.
According to Okumagba, “While the doctors, nurses and pharmacists here are doing their best in caring for patients, I think more attention is needed on the part of housekeepers to ensure that they don’t destroy the good reputation of other professionals here”.
He also mentioned that he had not experienced a situation where his personal data was released to a third party without his consent.
NDPR and Patients’ Rights Online
The Nigeria Data Protection Regulation (NDPR), a policy of the National Information Technology Development Agency (NITDA), was inaugurated in 2019, “to safeguard the rights of natural persons to data privacy; foster safe conduct for transactions involving the exchange of personal data; and to prevent manipulation of personal data”, among others.
In legal parlance, a natural person is a person that is an individual human being, as opposed to a legal person, which may be a private or public organisation.
The NDPR essentially stipulates procedures for obtaining and sharing personal data of natural persons by any practitioner or organisation. It also outlines sanctions for any breach of the policy.
Curiously, however, our investigations revealed that that most Nigerian organisations and professionals are yet to embrace this policy after three years of its establishment.
Similarly, there is no proof that any health worker has been sanctioned for violating patients’ rights to privacy and confidentiality. This was disclosed by Barr Olufemi Daniels, the Lead- Regulations Monitoring and Compliance at NITDA, who spoke with Pharmanewsonline.
Explaining why the NDPR had not gained ground in the country, Daniels put the blame on the culture of communal living among Nigerians.
He said: “The culture of data protection and privacy is not ingrained in the Nigerian society. This is partly due to the cultural orientation of African societies, where openness and communalism is promoted.
“However the rise of the digital economy has increased the need for privacy in online and offline interactions.
“We have observed that Nigerian banks and multinationals are mostly quick adopters, while some others feel the NDPR would go with the wind.
“NITDA’s sustained implementation of the Regulation has led to a significant improvement in the attitude of Nigerians to privacy and data protection.”
Lagos Outshines in NDPR Adoption
When asked how many states’ Ministries of Health had embraced the NDPR among the 36 states of the federation including the FCT, Daniels said only the Lagos State Ministry of Health had complied.
“Only the Lagos State Ministry of Health has fully complied with the NDPR. The Director General of NITDA led a team to Lagos to validate the exercise and to meet with His Excellency, Babajide Sanwo-Olu, on 19 May 2021”, he asserted.
Interestingly, however, during a survey conducted on seven public hospitals in Lagos State, it was discovered that even the adoption of NDPR by the Lagos MoH is still at the elementary stage, as most of the patients interviewed said they were not aware of any regulation called NDPR.
The vehement resistance from many of the officials of the state’s public hospitals to the request of our correspondent to administer questionnaires on patients in their clinics is also concerning. It gives the impression that the hospital directors have skeletons in their cupboards as regards the implementation of this policy.
NITDA Lenient with Sanctions
When asked for the number of health professionals that had been made to face the specified punitive measures for sharing patients’ sensitive personal medical data without the patients’ consent, Daniels disclosed that the agency had not sanctioned any health worker for breaching the NDPR. He added that even though some culprits had been caught, they were only mildly reprimanded.
According to Daniels, “Presently, we have not fined any institution or practitioner for infringements on patients’ rights.
“We have two cases at hand presently. One is a case of blood sample of a patient in transit that got missing. We have reprimanded the personnel in charge and told her to get another sample from the patient.
“The second is the case of a patient’s COVID-19 test result sent to a wrong person. While we are still investigating this matter, we don’t want to mention the names of patients and practitioners involved to avoid stigmatisation. Directives have been issued out for operatives to trace and recover the result.”
NITDA’s Effort towards Compliance
Daniels further disclosed that NITDA had begun a project to develop a privacy toolkit for the health sector. The project, according to him, had been developed in collaboration with the Lagos State Government, with the aim of producing best practice templates, guidance and tools. This, he said, is to make it easier for health sector stakeholders to comply with data protection laws and policies.
“Nigerians must understand that their data is life. Any abuse of personal data does have a long-lasting effect on the persons involved.
“Digital services must be consumed with care. The idea of taking collateral free loans, or entering some online ‘deals’ could be a trap to collect data that would be used to blackmail one later. It is time to pay attention to details online and to be cautious in consuming services”, he said.
Digital Expert’s Reaction to NITDA’s Handling of Erring Practitioners
Reacting to NITDA’s leniency with health practitioners who breach data regulation policy, Mr Adeboye Adegoke, Senior Programme Manager, Paradigm Initiative, absolved NITDA of blame due to the newness of the policy. He said: “Although I’m one of the strongest critics of NITDA, but we have to be fair to them, because when you introduce a new law, it will take some time for people to get used to that law. So I would take it that probably NITDA is still allowing these organisations to understand the laws and recruit data protection officers who can help them with compliance”.
Speaking on the slow pace of NDPR domestication across the federation and its implication for patients’ digital rights, Adegoke described it as a protracted issue that may take some time to resolve. “We are not in a very good place, and NITDA’s effort in introducing NDPR can be seen at least as a mitigating effort; although I’m not a big proponent of the regulation model NITDA is pushing – not because of the content of the regulation itself but because of the status of NITDA as an agency of the government that was not set up to be independent. That for me is a big issue. So from the digital rights perspective, we cannot really say that our interest has been really taken care of.
“Although I may not be in the best place to advice NITDA on fast-tracking adoption of NDPR by health institutions – because I’m not a big fan of the regulation model – however, since that is what we have now as regards data protection in Nigeria, I think there is a need to create more awareness for more people to know about the regulation and its implementation. Looking at the bigger picture, NITDA should be working with more stakeholders to give Nigerians proper orientation about the regulation”, he stressed.
PBoR Objectives and Implementation
Similar to the NDPR, the Patient’s Bill of Rights (PBoR) guarantees the offline rights of patients to good healthcare and satisfaction.
Launched in July 2018, under the supervision of the Consumer Protection Council (CPC), now Federal Competition and Consumer Protection Act (FCCPC), the PBoR aggregates all patients’ rights that exist in other instruments, including the 1999 Constitution, the Consumer Protection Act, the Child Rights Act, the Freedom of Information Act, and the National Health Act.
While all the 12 health rights contained in the PBoR are essential, Pharmanewsonline can report that some of the rights are higher in the hierarchy of needs than others. These include 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; and right to receive urgent, immediate and sufficient intervention and care, in the event of an emergency.
Findings from Survey
Disturbingly, our findings revealed that majority of Nigerian patients are not aware of their rights, much less exercise them.
In our survey of ten public hospitals in Lagos and Delta states – which included LASUTH; LUTH; FMC Ebute Metta; General Hospital Ebute Metta; General Hospital Ikorodu; Orile-Agege General Hospital; NIMR; FMC Asaba; Central Hospital Sapele and Central Hospital Warri – we sampled a total of 250 hospital-based patients, using a questionnaire.
Out of the 235 respondents who completed and returned the questionnaire, we found that 58.72 per cent said they were unaware of their rights (as enshrined in the PBoR). Again, the survey found that all state hospitals visited had no resemblance of PBoR display in a conspicuous place for patients’ enlightenment.
Regarding NDPR, the survey shows that only 13.19 per cent of respondents were aware of the regulation and its provisions.
Another discovery from the survey was that medical record staffs were the prime suspects of patients’ data leakage, as most victims pointed accusing fingers at them.
On data rights infringement, findings from the survey revealed that there were both male and female victims. However there were more females than males. Indeed, the figure was double for the females. This means that for every male who whose rights was allegedly violated in public hospitals, there were two female victims.
Pharmanewsonline considers this an eye-opener for regulators in public health facilities to address the violation of patients’ rights. Moreover, particular attention has to be given to the frequent violation of women’s rights; as such a trend has negative implications on the attainment of United Nations Sustainable Development Goal (SDG) 5, which seeks gender equality as a fundamental human right, and much more as a necessary foundation for a peaceful, prosperous and sustainable world.
Stakeholders Responsible for Absence of PBoR in Hospitals – FCCPC
When asked reasons for the rampant unawareness about PBoR among patients and the absence of the policy in many hospitals four years after it was commissioned, the Director, Business & Consumer Education, FCCPC, Mrs Joy Lekwauwa, heaped the blame on the apathy of stakeholders who are supposed to be vanguards of the policy.
According to Lekwauwa, “After the launch of the PBoR by the Vice-President, Prof. Yemi Osinbajo, SAN, four years ago, each stakeholder was to be actively involved in its promotion. These include the media and the civil societies. However, we have not seen much in that regard. Primarily, that could be responsible for the current poor knowledge of PBoR in public hospitals, as you have identified.”
She continued: “Given the importance of healthcare in our society and the size of the country, hospitals were expected to domesticate and display the PBoR at strategic locations within their facilities. As you can imagine, there are many hospitals that have not done that.
“As a result, the Commission held a dialogue with the medical directors of hospitals in the country on September 14, 2021. The medical directors agreed unanimously to domesticate and promote the PBoR. So we look forward to patients learning more about the PBoR.”
MDCN, NMA, NANNM React
As the body saddled with the responsibility of regulating medical practice in the country, the Medical and Dental Council of Nigeria (MDCN) has a major role to play in cautioning or sanctioning medical doctors who deliberately violate patients’ rights. However, several calls and SMS made by this reporter to the phone number of MDCN Secretary, Dr T.A.B Sanusi, received no response.
On his part, the President, Nigerian Medical Association (NMA) Prof. Innocent Ujah, declined to answer the questions posed to him by Pharmanewsonline, with the claim that it was out of his jurisdiction to react. Instead, he referred our reporter to the MDCN.
In his words, “I cannot answer your questions on disciplinary actions against doctors because NMA has no role in disciplining erring doctors; it is the responsibility of the MDCN. Even when people write to us on disciplinary actions of doctors, we refer them to the MDCN”.
Similarly, when asked for his reaction to complaints about nurses mistreating and disrespecting patients, the President, National Association of Nigerian Nurses and Midwives (NANNM), Comr. Michael E. Nnachi, passed the buck to the Nursing and Midwifery Council of Nigeria (NMCN), saying the NANNM shares the responsibility of nurses’ regulation with the Council. He however added: “I won’t answer that question until I make my personal findings to establish the particular nurse that is involved”.
LASUTH CMD’s reaction on PBoR
Regarding the absence of a PBoR publicity notice in LASUTH, the Chief Medical Director, Prof. Adetokunbo Fabamwo, told Pharmanewsonline that the institution is actually in support of the policy, adding however that it specifically operates the Service Charter Policy, which promotes same rights for patients as the PBoR.
The CMD further stated – rather surprisingly – that while the Service Charter Policy is in operation in all public hospitals in Lagos, compliance cannot be absolute at service delivery units because it is based on the individual healthcare practitioner’s orientation.
Fabamwo said of the PBoR: “Yes, we are also practising it. Many years ago, the Federal Government institutionalised the Service Charter Policy, and Lagos State signed-in into it. And all Lagos State institutions have Service Charter Unit.
“The major role of the unit is to first and foremost define what and what patients are supposed to expect from us and what patients should look forward to. It is the same thing as patients’ rights. The other role that the Service Charter plays is in monitoring that all the service delivery points in the hospitals are complying with all those expectations. Definitely it cannot be 100 per cent because these are things that are individual based sometimes.
“Clearly, the institution supports the delivery of those Service Charter points 100 per cent, but the implementation at the service delivery points will depend on who and who are there. So one of the responsibilities of the Service Charter Unit is to monitor what is happening at the delivery points and give regular reports to the board of the hospital.”
FMC Asaba’s Compliance with PBoR
In a chat with a staff of FMC Asaba, who prefers anonymity, she acknowledged that PBoR is fully in operation at the institution, as it is conspicuously displayed at strategic places within the facility. She stated, however, that patients can sometimes get on the nerves of health workers, and being human, these workers may yell at patients to caution them.
According to the source, “This scenario is peculiar to NHIS clients who come in group with their families and they want to be attended to immediately. When they become so agitated, the staff might have nothing else to do than to go out of his or her way to bring the situation under control. But the pharmacy department strives as much as possible to adhere strictly to the policy,” she explained.