Crawford Kilian (CK; with one "l") and Andrew Rambaut (AR) passed a couple of tweets a couple of evenings ago (my time), and I chipped in my 5c worth (inflation and all) at the time.
I wasn't really meaning to be argumentative, my comment was asking, cynically, whether a suggestion to improve patient privacy suggested by AR would help unstopper the cork of oft-times incomplete and sometimes slow or non-English information on cases of MERS-CoV infection in Saudi Arabia.
Yesterday afternoon CK penned some more detailed thoughts on the issue of patient privacy, stigma and microbial infections. The overall message from all related communication's (including Saudi Ministry of Health's [MOH] Dr Ziad Memish's comments to CK on patient privacy back in September) is that patient personal space was being encroached upon by media who had deduced their identity from the amount of detail in the Saudi press releases
about cases. This may have led to these patients, who had apparently complained to the Saudi MOH, being identified to their community and perhaps being stigmatised just because of their viral passengers. As Dr Memish wrote....
Over the last year we had patients and families complain to us about intrusion of their privacy by media reporters who recognized their identity through the transparency of reporting their case details.
He had said a similar thing a few days earlier in an interview I wrote about here.
I offer some thoughts and arguments below; and yes, this time I am being argumentative. There are a few issues here...
- Patient privacy must always be protected
- Is patient privacy being breached?
- Should we expect to have MERS-CoV data available for hobbyist bloggers and interested scientific parties?
As someone who has worked in a research capacity with patient samples for 2 decades, I've seen the ethical sands shift constantly towards improved patient privacy. I'm painfully aware that the need to ensure the patient's privacy is paramount. I can't pipette from a sample unless I have the appropriate external ethical approval to do so - every funded project in our lab is conducted this way today. I have not one problem with that whatsoever. At the end of the day, whether in a research or public health capacity, I want to try and help sick people - not make their lives more difficult.
When you submit yourself as a patient to a Doctor's care you do not expect to have your results show up in the local newspaper or on a tinpot blogger's column (I'm talking of mine not yours CK or AR!), or to be hounded by the media as you exit your hospital. Of course there may be exceptions to those people - we saw quite a few H7N9 cases wheeled or walked to the waiting press pack earlier this year. Being a patient puts us at a level of vulnerability that none enjoy and for it to be taken advantage of is absolutely unacceptable. I would have thought that keeping a patient's result details private is part of the Duty of Care.
Still, I do wonder at the extent to which MERS-CoV patients are stigmatised because they are MERS-CoV-positive which was deduced by the media from the "transparency of reporting their case details". Let's take the best case scenario for MERS-CoV case details...age, sex, region, hospital name, underlying conditions, perhaps a couple of other items on a good media release. How does the media find out about that person to the extent that they track them down and hound them for an interview? They don't have access to medical records. Is the media release (see below) enough or should a bony accusatory finger be pointing towards a leak from one of the patients' sources during their travel through "the system"; someone not all that fussed about maintaining patient confidentiality, for whatever reason(s)?
There is quite a chain of links between the patient and many others when that patient is sampled for disease diagnosis; a chain made longer when the disease is an unknown like MERS, driven by a newly discovered virus like the MERS-CoV. The lab techs will receive and process the sample, matching a patient slip to a specimen which is tested and linked to a result which may then be repeated externally for reliability. The clinical team(s) providing care and the hospital administrative staff, perhaps ambulance services, public health officials, international scientific and clinical experts such as World Health Organization and perhaps a panel of experts in a working group may or may not all have more patient detail than was released to the media. The family and those friends that are told will also be among the knowing. All this is just the same as in other countries around the world. How is it that reporters can identifying the patients? Is it happening differently in other parts of the world to the way it is in the Kingdom of Saudi Arabia; as CK noted, is it a cultural thing?
If you take a look at a recent English language MERS-CoV case media release, from the Saudi MOH, we still see that some key patient details are continuing to be reported...
Within the framework of the constant monitoring and epidemic surveillance of the novel Coronavirus (MERS-CoV), the Ministry of Health (MOH) has announced that five new cases have been recorded.
The first case is for a 57-year-old male citizen, who has been suffering from some chronic diseases. Now, he is at the IC unit, receiving the proper treatment, may Allah grant him speedy recovery.
The second case is for a 73-year-old male citizen, who has been suffering from some chronic diseases. He passed away, may Allah have mercy upon him.
As for the third (43-year-old resident), fourth (35-year-old resident) and fifth (27-year-old citizen) cases, they work at the health sector. They were in contact with confirmed cases of this virus, and didn’t suffer from any symptoms. May Allah, Almighty, heal the injured cases and bestow upon them the cure they so earnestly desire.
If this little amount of detail is not considered a problem now, then I don't see why a slightly expanded media release should be any more of a patient identifier; expanded along the lines of what I've listed previously here. Extra information is, I firmly believe, useful for "crowd-sourced epidemiology" - that which provides many fresh sets of eyes to perhaps help analyze aetiologies, peruse pathological puzzles and delve diagnostic dilemmas. It also allows for the re-presentation of all manner of complex infection and disease issues, after filtering through the minds of others, some of whom are very good at extracting points of interest for a much wider audience, thus contributing to keeping the world informed.
But I'm drifting.
What about that "mysterious outbreak" in Montgomery County, Texas, USA back Dec-19? We didn't get each and every case's details and sure, that didn't raise too much ire did it? In fact, I don't think we've officially heard whether all 8 people (50% of whom sadly died) were influenza A(H1N1) virus positive or not. Yet it was assumed by the press and some others to be the case within hours. What then is the "So What" question from such an absence of patient information for you and I and the rest of the world who are not part of the patient chain? It's simply "so what??" We didn't need to know more than that. Yes, its horrible that people should die when they may not have had to. And yes, a US citizen's cultural affiliation with the media may be as different from that of a Saudi Arabian citizen as chalk is from cheese, but so long as the experts on the ground know the details, that's what really matters isn't it? So long as the treatment and management of the patients, the informing of their loved ones and the prevention of further viral spread is being attended to (including reinforcing the message that flu is a vaccine-preventable disease in the Montgomery instance) then people outside the loop of patient-doctor-scientist-admin-loved ones don't need to know anything further do they?
If such data could be released without identifying the patients at all - great, and I would have thought that quite possible in a country of 20+ million. The contents of current media releases seem to support that thinking too. But if it is not possible, then perhaps we should wake up to the fact that no one outside that list above needs to know. I've written about entitlement previously.
Personally, I doubt that if the MOH stopped printing these tiny snippets of deidentified case detail, like those quoted above, it would halt the media from seeking interviews with people who had been afflicted with a "mystery" illness. But what do I know?
As we know from Dr Hatem Makhdoom, who accepts the description of an an experienced virologist on the Saudi Ministry of Health team said...
..in other words the experts in the scientific world are getting the knowledge they need, even if we bloggers are not.
At the end of the day, its about current and potential future patients; caring for the former, and preventing illness among the latter.
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