RIYADH/LONDON (Reuters) - When Saudi Arabia announced last week it had found 113 more cases of the deadly Middle East Respiratory Syndrome (MERS), it didn't just force a rethink of the threat the virus poses, it exposed institutional failings.
Saudi health sources and international virologists said poor communication and a lack of accountability in government departments, inadequate state oversight and a failure to learn from past mistakes have all hindered Saudi Arabia's battle against the SARS-like virus.
They say it is too soon to tell if reforms introduced by a new acting health minister can overcome what they see as underlying problems.
Some top Saudi health officials say they accept that delays in reporting MERS cases were caused by poor communication between hospitals, laboratories and government departments, but they stress things have improved significantly since the appointment of the new minister in late April.
The health ministry "has put in place measures to ensure best practices of data gathering, reporting (and) transparency are strictly observed", it says, and "to ensure that from now on, case information will be accurate, reliable and timely".
Saudi Arabia has been host to the vast majority of cases of MERS - a viral infection which can cause coughing, fever and pneumonia - since it was first found in humans two years ago.
International concerns over Saudi Arabia's handling of the outbreak grew last week when it said it had under-reported cases by a fifth and revised the case numbers to 688 from 575.
People in the kingdom are still becoming infected with and dying of MERS every day, and sporadic cases have been found outside Saudi Arabia as infected people travel. The worldwide death toll from MERS now stands at more than 313 people.
International scientists have complained of a lukewarm response from Saudi authorities to offers to help with the scientific research needed to get a handle on the outbreak, and have questioned the quality of data collection and distribution that could help reveal how the disease works.
Tariq Madani, head of the scientific advisory board at the health ministry, said 58 of the 113 cases added last week had been confirmed as positive in government hospitals and laboratories, but the results had simply not been passed by those institutions to the ministry.
Another 22 cases tested positive at the King Faisal Specialist Hospital in Jeddah, but duplicate samples were not sent to government laboratories and the institution did not communicate the results to the health ministry, he said.
A spokesman for King Faisal Specialist Hospital declined to comment further and referred all queries back to the health ministry.
The remaining 33 cases had tested positive in private laboratories but showed as negative in government ones, Madani said.
Madani said he did not believe the under-reporting had been deliberate and he thought a 20 percent shortfall in reported cases was not unusual in a disease outbreak.
"This can happen anywhere in the world, that 20 percent of patients may not be reported. This is within the limit. It's actually less than 20 percent," he said.
However, Ian MacKay, an associate professor of clinical virology at Australia's University of Queensland who has been tracking the MERS outbreak since the virus was first identified in 2012, is sceptical about the notion that it is normal for 20 percent of cases to go unreported.
"I know of no global scientific norms that define a threshold below which it is normal to under-report cases of any viral cluster, outbreak or epidemic," he said.
Madani said in some cases patients intermittently shed the virus, so it is not caught in a test. The ministry's policy, he said, had been to say that if there was a discrepancy between test results, only government laboratory results should stand.
The new acting health minister Adel Fakieh has changed that policy, Madani said, and from now on positive tests from any laboratory accredited by the health ministry will count as confirmed cases.
The appointment of Fakieh has also led to other changes, he said. Authorities have brought in tighter infection procedures in hospitals and are trying to be more transparent about how they are tackling MERS.
"After the change of minister they involved people more in preventative methods. There were text messages on hand washing, the public has been more involved," said a Saudi public health expert who was critical of the ministry earlier this year. He, like some others interviewed for this article, spoke on condition of anonymity because he was not authorised to comment.
But some international scientists still complain that data published online by Saudi authorities, which includes daily updates on confirmed new infections and deaths in different cities, is not comprehensive enough to allow them to research the disease.
The European Centre for Disease Prevention and Control (ECDC), for example, said it was not clear whether the new cases listed by Saudi authorities met the World Health Organisation's definition of confirmed cases. The ECDC also noted the absence of detail such as age, gender, residence, probable place of infection and other information.
Madani said the ministry only published information it considered immediately relevant to the public. He said more detailed data, collected on all patients since the first confirmed case in June 2012, could be made available to scientists who wanted it and had already been given to the World Health Organisation.
A spokesman for the WHO confirmed the organisation had received detailed information which it was now verifying with Saudi authorities to ensure there was no double counting of cases in the WHO's global tally.
"We collect extensive data on demographics, location of the patient, their nationality. Then we collect...data in terms of clinical manifestations, complications that happened to the patients while they are in hospital, and the outcome," Madani said. Officials also follow up contacts of known MERS cases daily for 14 days, he added, asking them to stay home in isolation and admitting them to hospital if they show symptoms.
Michael Osterholm, director of the Center for Infectious Diseases Research and Policy at the University of Minnesota, said Saudi authorities should be congratulated on their pledge to be more open. "From talking to people inside the Kingdom right now, I'd say there is a very new sense of transparency in the last few weeks," he said.
DOCTORS NOT INFORMED
However, challenges remain. The problems are evident in the case of one kidney patient who fell ill in Jeddah in April, a main location of the outbreak.
The man was transferred from another hospital to the King Faisal Specialist Hospital (KFSH), but doctors there were not officially informed by medical staff who had previously cared for him that they suspected he might have contracted MERS, said a city health source.
As a result, King Faisal Specialist Hospital staff took no extra precautions and within a week the head of the intensive care unit and other staff, including a pregnant nurse, fell ill. Both the nurse and ICU head have now recovered.
The problem was that suspicions of MERS were only communicated verbally, rather than being put on paper in a patient's file, said Sabah Abuzinadah, a former head of nursing for a government commission on healthcare workers.
The King Faisal spokesman declined to comment.
Such problems were familiar to people inside Saudi Arabia who had been involved in cases of MERS over the previous two years.
"At first the government would only accept that those patients already in intensive care had MERS. Even when cases were coming to the emergency room with severe respiratory symptoms they were told to go home and not investigated," said the head of a private hospital where some MERS cases occurred last year.
He denied that there was any deliberate attempt to hide MERS cases, but said officials - and sometimes emergency room doctors - found it hard to accept that a new disease had raised its head in their hospital. The hospital declined to comment.
He said the extent of the outbreak in Jeddah in April and May showed that complacency had set in after the rate of infection slowed throughout last summer, autumn and winter, and when there were no confirmed cases during last year's pilgrimage season. "We did not learn from the outbreak last year. The Health Ministry did not get the severity of the issue. But it was not just them who underestimated it. Even in the best private hospitals there were cases," he said.
Abuzinadah said nursing groups in the kingdom had warned the health ministry about systemic problems in hospitals and poor government oversight.
She said they had called for better enforcement of infection control procedures - something Madani says is now being implemented - and independent regulators for hospitals and healthcare professionals.
The only official body now overseeing healthcare workers is the Saudi Commission for Health Specialities, whose board is chaired by the minister. According to its website, it is responsible only for training and setting standards, not for regulating or evaluating performance.
Hospital regulation is run by the health ministry, which also manages many of the country's hospitals.
Other hospitals are run by private healthcare companies and by other state bodies, adding to the complexity of the system.
"It's a complicated country. Even people like Memish (the deputy minister sacked last week) don't really have access to everything (in terms of patient data and information)," said Christian Drosten, a University of Bonn virologist who has worked on MERS with Saudi scientists.
Many of the people who spoke to Reuters for this story said the creation of a new control and command centre should help coordinate the response to MERS.
The new centre, announced by Fakieh on June 1, aims to bring together public health, research, infection control, clinical operations and data analysis into a new unit.
"Before, our issue was with communication - other ministries only knew what was going on by reading the newspapers," said the private hospital head who had dealt with MERS last year. "Now, everyone is involved."
(Editing by Janet McBride)