The Wiki Leaks Party is proposing to promote ‘scientific policy’; decision-making based on research, evidence and clear, transparent principles. It is also supporting Internet freedom: “the WikiLeaks Party will be fearless in its opposition to the creeping surveillance state, driven by globalised data collection and spying agencies, both state and corporate controlled. We will demand that all information on data seizure and storage of citizens’ data by government agencies and allied corporations be made public.”
Both of these are laudable aims.
Now explain to me how the Wiki Leaks Party will operationalise these actions in relation to health care and health care data. Over the last few decades best practice in health care has been driven by the evidence based medicine (EBM) movement so the Wiki Leaks Party has a solid platform to base its’ promotion of scientific policy making. Interestingly EBM is now coming into collision with the era of big data. The problem is that we don’t have enough access to the data we already have and we aren’t collecting and using enough of the data we need to really inform the decision making process. By we I mean health care providers both Governmental and private.
I guess the trite response is that the approach to health care data will be through the principle of transparency. Well there are already many claims about transparency from the existing powers and health care providers. So lets have some detail about the the Wiki Leaks Party will handle big health data.
One of the things they didn’t teach in medical school is how to continue to the conversation of the consultation after the actual physical consultation is over. Supposedly shared decision making leads to better decision satisfaction and outcomes but what happens once the patient leave the consulting room.
In some cases they leave with a pile of printed information. They may have taken their own notes. Or a carer may have taken the notes and been the second pair of ears. But I know the wrong messages may have been taken away or there will be lots of questions.
One way to deal with the problem is to ensure that the patients have had an opportunity to ask the questions in the first place – question prompt lists can help with this.
Another potential way is to provide a record of the consultation. This can be a written summary or alternately it can be an audio record of the consult. Some doctors are set up to do this but these days it most commonly happens when patients ask me if they can record the conversation and then they use their mobile phone.
An alternate potentially useful method is to develop your own resources to refer the patients to. I’ve just started, albeit extraordinarily slowly due to time commitments, to develop videos using the Explain Everything platform. Hopefully my patients will find these useful both for innformation about their treatment and to inform decisions.
Here is my talk on Xeloda Side Effects
In the two weeks before Edward Snowden broke news about PRISM I gave two lectures about research ethics. It is traditional to note that what is ethically acceptable is in constant flux as technology changes and also that ethical principles tend to emerge in times of crisis, e.g. human experimentation that is also genocide. An observation that I made during these lectures was that the next crisis is probably going to relate to the use of ‘big data’ repositories in health. Well I didn’t quite nail the health part but bingo! – the use, security and privacy of individual’s data, in this case meta-data from telecommunications, email and text messaging, became the topic of the day.
The public is now aware that there are large repositories of data about themselves. There will start to be greater awareness that some of these data repositories include health records that are collated electronically. Currently, in Australia, these repositories and most other healthcare systems, these repositories are not very detailed but they do record if you’ve been to hospital, why you’ve been to hospital and a host of demographic information. This data is collected legally and is used legally for public health and planning purposes and in many cases for medical research, usually under additional regulation through ethics review processes.
The other bit of information that the public will become aware of is that these repositories of data are linkable. This means that a dataset collected in one system like healthcare is potentially linkable to a dataset in another sector like finance, or the justice system.
The issue becomes how the public, how society reacts to this knowledge and what it believes is reasonable use. The argument in the op-ed pieces in the major publications is that programs like PRISM serve a purpose in protecting the public from security threats. Indeed, surveys of the public in the US suggest that generally speaking people support this assertion. So there are some ‘reasonable uses’ in the public interest. No doubt, the same will apply to health data. The question is where the thresholds lie and how much transparency there will be.
But let’s get back to all of that metadata. Clearly there might be uses for tracking terrorists or gun-owners. But there might be healthcare applications. The concept of small data has recently emerged. The example is the notion that your phone company can track your movements through your mobile phone. If an older person was less active this could show up in their small data and indicate that they are sick. Who does this data belong to? The person or the phone company?
At the moment there are no answers but no doubt there will be trickle down implications from the Snowden affair to other applications like healthcare.
imedicalapps has reported that Apple may be starting to impose tighter restrictions on the approval of mHealth apps through the iTunes store. This follows on the appropriate oversight of the uCheck urine analyzer application (a way for automated reading of urine dipsticks).
The implication of the report is that Apple will only accept medicines information that is endorsed by the manufacturer of the medicine. Whilst this is a liability issue for Apple in some respects it is also fair guidance although one would argue that endorsement of the manufacturer might simply constitute dissemination of medicines information in accordance with the approved Product Information (PI) rather than written endorsement by the manufacturer.
Whilst such an approach is in keeping with law in actual medical practice a large number of medications are used according to valid evidence but outside information in the PI, also known as ‘the label’.
There is an urgency for a public debate about the best way to deal with this issue. Given the number of apps already in existence and the number of medications it is not likely that a regulator or an individual company has the resources to review everything in a timely fashion. The best approach might be to pursue (international) standards as proposed by organisations such as Happtique rather than a draconian regulatory approach.
Just as the NSA scandal has revealed the level of involvement of IT companies in our day to day lives we must also remember that these companies….Apple, Samsung, Google, etc, are now also the largest healthcare providers and the main conduits for health information both for practitioners and patients.