A press release has been issued following a survey of 650 members and 1700 members of the English public by the Medical Protection Society (MPS) to gauge views on the Department of Health’s commitment for patients to be able to view their medical records online by 2015 and headline takeaways reveal that “unless there are proper safeguards in place to protect patient confidentiality” most of us (80% of the public and 86% of MPS members) consider plans for online medical records as akin to “opening a ‘Pandora’s Box’“.
To date I have never heard anyone making a case for proper safeguards to NOT be in place so I’m not sure what the survey is supposed to be highlighting but I wonder if the respondents are familiar with the record breaking levels of patient engagement that happened when Kaiser Permanente (a 9 million member US health plan provide with 167,000 employees and $47B in operating revenues) adopted a mobile first strategy and launched mobile accessible records for their 9 million patients in the USA.
All of the concern in the press release about unintended consequences surrounding access to “sensitive information being accessed by a patient’s family members” seems me to really conclude any debate over the need for us to have our medical records securely linked to the connected device we all have, carry with us all the time, don’t share with anyone else, etc.
I think it’s interesting to look at how many concerns disappear when we take a mobile first approach to patient accessible EHR’s:
“MPS has seen firsthand how things can go wrong for patients and doctors when confidential medical information gets into the wrong hands. Imagine the teenage girl who has had a termination without her mother knowing” Dr Stephanie Bown, Director of Policy and Communications at MPS”
I think it’s quite obvious that the teenage girls’s mother could have probably discovered the same by accessing the content of her mobile (eg. personal SMS’s to/from her friends) so this really makes the case for the minimum viable privacy requirements to be centred around the personal mobile of the patient.
“or the patient who informs their doctor about abuse at the hands of their partner; if they were to accidently leave their online record open at home, this could have dire consequences for their relationships and put extra pressure on the doctor to deal with the fallout” Dr Stephanie Bown, Director of Policy and Communications at MPS
To my mind this encapsulates the importance that patients have the opportunity within an informed consultation with their Doctor to opt into any services (abusive partners are also capable of opening an envelope that’s not addressed to them!) and for public healthcare providers to twin Patient Record access with computer literacy/proficiency training and testing (just like they are starting to do for healthcare professionals).
“The public is very clear that they consider doctors as critical to protecting their medical information; more than two-thirds (69%) agree that their medical records should only be accessible to a healthcare professional”
Of course in the UK most patients can’t actually “agree that their medical records should only be accessible to a healthcare professional” because NHS Healthcare records are ALREADY accessible to plenty of people who aren’t what the public would consider to be “healthcare professionals”.
Moreover I think statements like this are misleading because it’s unlikely that patients are in the best position to judge the opportunity this will create for their care because the benefits are only experienced when we have them eg. all the evidence shows patients have very little interest in looking at their EHRs but an incredible passion for using the services that these enable such as more convenient access to their professional carers, more informed consultations, less erroneous information being used to make clinical judgements, etc.
“Furthermore, a survey of MPS members highlighted strong concerns, as less than 30% of doctors think that allowing patient‟s access to their records online is a good idea”
I look forward to seeing the full results of the research in April as I find it hard to imagine that this isn’t just a classic case of false consensus eg. it’s unlikely that practising Doctors who have the time/interest to be completing MPS online surveys that ask whether “online records are a good idea” have got much better to be doing.
“Patients requesting access to their medical records is relatively uncommon in the UK, with more than half of doctors (55%) receiving requests from patients to see their records less than once a month. There is likely to be increased interest when medical records are accessible online, however it is not enough to equip patients with the ability to access their medical records online without supporting them to use their information safely and appropriately”
Perhaps the surveyors don’t realise the time limitations many patients feel subjected to when having NHS consultations. Also I wonder how much of this lack of patient/provider confidence stems from widespread media coverage of the failures within the UK’s $22B National Program for IT eg. why would a patient waste their energy asking if they can have access to NHS Healthspace after most of the British media have by now covered the story that it is being laid to rest? Why would patients attending a clinic that has a “1 problem per visit” sign hanging in the waiting room want to discuss viewing their info online during that precious appointment time?
“Nearly three-quarters (73%) of the public and 66% of doctors agree that particularly sensitive information should never be accessible online. This supports our call for there to be careful consideration as to whether only parts of medical records should be accessible online, with information about particularly sensitive issues such as mental health, sexual health, child protection and counselling only available if it is requested by the patient”
It always amazes me that so many will criticise efforts to make EHR’s accessible and are so ready to add to concerns surrounding patient accessible EHRs but in the same breath will be happy to make sweeping calls for solutions that they’ve spent just 5 minutes thinking about eg. where’s the detail for the process they have to stop the “patient who informs their doctor about abuse at the hands of their partner” also being instructed by their abuser to request online access to their full medical record?
“Patients expect the information they give to their doctor to be kept confidential and if this doesn‟t happen, it could cause a breakdown in the relationship of trust. We want a firm commitment from the government that the information strategy will not compromise patient confidentiality – because once the contents of “Pandora’s Box” have been released into the wrong hands, the damage cannot be undone”
I think the complexity of the challenge means we should look to organisations like HIMSS or the RCGP to coordinate efforts like this and medicolegal insurers should be contributing to these efforts rather than hyping concerns about how patient accessible EHR’s could release all the evils of the world.
I’m not surprised the public are so negative about these DOH plans but I wonder what changes would be found if the MPS conducted the survey again with the same 1700 members of the public but before asking them to complete it had them:
> Watch a video that the DOH needs to urgently make that outlines their vision of the future healthcare environment they are trying to create (this one that’s already been made by KP should give them some ideas)
> Explained that the system could be linked to 999/911 emergency medical services so that together with their precise location and a live stream video was available whenever a call was made for assistance (perhaps they could elaborate on this with their example of the abused partner being able to get a response by just making a ‘silent call’ to emergency services for help).
> Explained that the DOH system would document and send them a SMS every time their EHR was looked at by a healthcare professional (detailing the precise who, where and why) and the opportunity they have to complain about any abuses.
What do you think?