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.
Medicine and healthcare is a natural home for myths and myth-making. Long before there were attempts at understanding the science of the body and disease, and before evidence-based medicine became fashionable medicine was based on anecdote, folklore and myth.
Medical myths are not a thing of the past, indeed new myths, like ‘vaccines cause autism’, are emerging all the time. A typical consultation with one of my cancer patients can primarily be spent trying to dispel myths like ‘not eating sugar will starve the cancer of energy’ or ‘surgery lets the air in and spreads the cancer’. Whilst many myths are mostly harmless some are very dangerous. I’ve had patients decline curative treatment and adhere to mythical beliefs. Potentially fatal childhoods are seen a resurgence due to myths around vaccination.
One of the roles of physicians is to be vigilant for myths and to dispel them whenever possible. Sometimes you will be surprised about what you thought was fact is actually a myth.
The following are some links for further reading:
In my previous post I wrote on the need for training for doctors who are on call.
Well now I want to turn that post on it’s head.
The problem with being on call is that when you take a call from the hospital you deal with an incomplete dataset. The dataset is mostly incomplete because hearing a description about a patient simply isn’t the same as seeing the patient yourself, taking the history yourself and examining them yourself. Sometimes what might seem straight forward decisions might be the wrong decisions simply because the gut feelings that come from the experience of seeing the patient first-hand is taken away.
There have been some limited forays into breaking down the barriers between the ED and the remote physician. ECGs can be transmitted to smart phones (I even knew a cardiologist who had a fax machine in his car for the same purpose). Blood results and radiology can be viewed over the web. But this still doesn’t bring the patient to the doctor.
This can now change with the advent of remote presence devices (RPD). The simplest explanation is that this is a drone or telemedicine robot. A RPD system consists of a remotely controllable mobile display screen and camera linked back wirelessly to the control station of a remote operator. The control station could be a desktop computer, a tablet or a smartphone. The operator (the on call doctor) can pilot the robot to the bedside of the patient and conduct a virtual consultation, perhaps with the assistance of a nurse, junior doctor or physician assistant to perform hands-on tasks like holding a stethoscope to the patient’s chest. The doctor and patient will be able to to talk to each other and see each other.
The bottom-line is that the on call scenario goes from the doctor on the end of the phone thinking “I’m not really sure how sick that patient is” to the doctor on the end of a video link seeing the patient and thinking “they don’t look right…..lets do x, y & z”.
Setting up a system might be less than a quarter of a salary for a junior doctor and the ROI is having the experienced doctor making decisions based on actually seeing the patient even if they aren’t in the building.
One of the things that wasn’t taught well when I went to medical school was actually how the health system works: in my case I’m referring to the Australian health care system but I’m sure the sentiment applies in other countries. Knowing how the health system works overlaps with how to run a business, which I’ll cover in a later post.
When you are studying medicine and even once you’ve graduated and working in the hospital you don’t really pay attention to how the health system works. The patients come and go and you do your best to look after them. It’s perhaps only once you actually have to go out and get a job, either in the hospital system or in private practice, that you start to care. When I refer to ‘how the health system works’ what I really mean is ‘how is health care paid for’. Once you get a job you are concerned with how you are paid and/or will pay other people. If you work in hospitals then you spend a lot of time listening to other people tell you you can’t do stuff because there is no money – even if what you want to do will result in real improvements and maybe even save money at the end of the day.
In Australia it is becoming even more important for medical students and junior medical officers to be taught how the health system works. As a result of the last round of health care reform the Federal government is phasing-in activity-based funding. So hospitals will be based on what they do according to a National efficient price. This sounds straight forward but in practice it is much more complicated. Hospitals won’t necessarily be getting paid on the basis of the activity they undertake. Governments must allocate budgets from finite coffers so the money local hospitals receives is based on projections, somewhat spuriously called targets. If the hospital undertakes more activity than predicted then unless it operates very efficiently it may end up over budget.
Medical students, junior and senior medical officers need to know about how activity-based funding works as they are the source of the the documentation about how much activity is being undertaken. Unless the doctor records not only the cholecystectomy but the co-morbidities of the patient and complications incurred during the hospital stay then ultimately the coding of the data to obtain funding will be inaccurate and inadequate. This in turn leads to inadequate models upon which the hospital activity targets are set.
These processes and in evolution and being rolled-out over the coming years. Doctors and their students need to become more familiar with how the system works so they can influence how their hospitals or practices are run and how the money is spent. Knowing how the system works will change how doctors work. Health care practitioners also need to be aware developments in primary care, such as the development of Medicare Locals. They will also need to keep up to date and the system is likely to change again. This is the decade of activity-based funding in Australia. The next decade might see a shift to process and outcomes-based funding and further changes to the way doctors practice.
I’ve only touched one major aspect of how the health system works. In Australia it is very complicated due to Federal, State and Local considerations. Medical schools will need to teach according to their local health care environment.
For more information see Activity Based Funding and the Independent Hospital Pricing Authority