One of the longest held traditions in medicine is the signing of the consent form before a procedure or surgery. I remember as a child, seeing family members sign such a form, and I recently signed a consent form for a small procedure that I underwent.
It is often asked if these forms have any significance. They tend to be too general and more so, they give a false sense of protection in the event that something goes wrong. The simple reality is that very few people actually ever read the consent form. And I do not remember a single case (from my own experience or that of colleagues) where a patient refused to sign the form. Very few individuals will even ask for clarifications before signing the form. As such, despite the continued use of such consents, they present very little information to the patient and offer very little protection to the doctor.
What are options? There is no question that in this day in age, one could view an online consent form that is specific to the procedure or surgery that the patient will undergo. This digital consent could use audio and video and drawings to explain all the details. This same website could include an FAQ (frequently asked questions) section to answer further questions (and these questions would be based on actual questions asked by patients in the past). Very importantly, such a website could be prepared in multiple languages, and in the US, the inclusion of a Spanish website would be welcomed by many. Once we are talking about the US, it is a simple fact that a single misunderstanding can lead to a very expensive lawsuit. Therefore, whatever the cost of building such a website, it would still be cost effective. Even today, there are some departments that require the patients to watch a video which explains the whole procedure including the postoperative process and even what to expect once you are home. But these are usually limited to a small number of procedures/surgery and are not interactive. Still, most anything would be better than a nonspecific consent form.
Interestingly, the issue of consent has become a major area of interest for technology companies. When you first access Google or Microsoft or Twitter or basically any online service, you are presented with a consent form that is meant to explain what privacy and security issues are involved in the use of the service. Once again, it is very rare that anyone actually reads these forms and it is even more rare that anyone turns down the service because of what is written on the form. Just like with the medical consent form, this raises the question of whether there is any value to the user or to the companies, of having this form checked off.
At least until the legal world decides more definitively about the need for and specific format of online consent forms, most likely nothing will change. I think it is a fair assumption that signing in to one of these online services, whether from a major company or from a small startup, allows a great deal of access to potentially very private information. With this assumption in mind, one should then decide whether the service and or the company can be trusted (a) not to abuse your data and (b) to provide you with an experience that is very worthwhile (so as to justify your loss of privacy).
The day will come when our personal information is saved in a special virtual vault and that each and every online service that accesses our protected data will leave a trail so that the services’ activities can be tracked. With this model, we will not type our personal information into each website. Instead, we will provide only a unique digital identification number that unlocks our virtual vault. Even with this ID number, each service will ONLY have access to those parts of our personal profile that we allow. So, let us assume that our geographical location is part of our personal information in the vault. We may allow Facebook to see where we are but we may refuse the same information to Twitter. And if Facebook appears to misuse our position information, we can immediately change a setting so that Facebook will lose access to this data as well. We will be in control !!
In this scenario, companies will compete to make it worthwhile for us to unlock our information. The various companies will be very careful with our security and privacy, lest they suddenly lose access to our protected personal information. I should add that within this model, it will be illegal to disseminate our actual personal details once they have been retrieved. Facebook will not be allowed to give Twitter our personal information – it will only be allowed to pass our ID number to Twitter and then we will decide if we will let Twitter in.
Can we now go back and apply this model to our health care? Eventually, yes. The day will come when all of our preferences in regards to healthcare will be saved in our personal online EMR, which ultimately will control the activity of the hospital based EMR. If during an operation, the doctor sees an unexpected need to take out a kidney, a future EMR will pop up an alert that says “this patient has not given consent for removal of the kidney”. Then, the question will be if the doctor can receive approval from the family or if the operation must be stopped and the patient woken up and be specifically asked about the removal of the kidney. It could be that the patient’s personal EMR will include a special consent allowing the doctors to do what is necessary even if it is unexpected. And if so, no pop up will appear.
Although some patients will not want to deal with handling their personal EMR and will prefer to defer to the doctor, they may not be able to. In the future, it may be a requirement before being admitted, that a patient will have to fill out certain sections of their online personal EMR. If the patient is to undergo a gall bladder removal, there may be a section of the personal EMR that explains what this means and asks a series of questions to make sure that the patient is fully informed. Basically, like it or not, the patient will not be able to escape being informed about their own health. This might be childish, but it will empower even resistant patients.
What should you do until all of this technology and security is in place? Be careful what you sign but appreciate that without signing, you may very well lose access to services that you want or even desperately need. The only real advice I can offer is to ask questions. No consent form can take that right away from you.
Thanks for listening