Our Medical Charts: An Inconvenient Truth

by Bongs Lainjo

During my years in the academic world, one thing that I constantly told my students was that ‘data and information’ are not the same. ‘Data’ is processed information. While the latter can be used for informed decision making, the former cannot. In other words data by itself is meaningless while information is meaningful.

Many of us have the tendency of using both words inter-interchangeably. This is a misperception that has been in existence for generations. And given the existing conventional wisdom, things are unlikely to change anytime soon. It is like some of us listening to music. Who cares about the lyrics? The sound, beats etc. are what propels the euphoria. In fact there are many songs I hum with no understanding of what the real message is. Data and information can be perceived in that context.

In this report, I will shy away from that confusion and say it as it should be. If I did it differently, it will be a betrayal of my profession and an unprofessional portrayal of knowledge sharing with the public.

Let us consider an area that I remain generally loyal to and that continues to serve as my comfort zone: health or medical data. The subject is so close to my heart that I published a book on data management! There is almost unanimity among many of us that our health data are sacred and should not be made available to third parties. In other words , our health data should only be limited to us and our physicians. This of course is understandable especially given the potential for misuse and abuse by third parties. In some states, patients have direct access to their electronic health information. And note, here I use the word information because some of what we know about our health and stored electronically can be used to make informed decisions. For example, change in blood sugar level or our blood pressure etc.

What remains mind-boggling about our health information is the damage and potential abuse if made available either by design or in error to unscrupulous parties. And there is even a more challenging dynamic that should raise a red flag among all of us. That is the level of vulnerability when it comes to what information about us that is already public. As we move from store to store or shop on-line, all we are doing is sharing our personal information unintentionally with the general public. Most people who shop on-line will agree with me that the websites we use have more background information about us than we can ever imagine. For example try to make a reservation and the site will give you a comprehensive report of your previous reservations. That is the outcome of phishing as the experts will call it. And yet we generally accept these situations as business as usual. That also goes to demonstrate our degree of ambiguity!

All these dynamics tend to highlight a set of important issues. These include ethical, confidentiality, encryption and legal. And can all these be addressed? The reality is that our current laws and policies are significantly outdated; and very ingenious and innovative efforts are required by the appropriate policy makers to address these issues.

So the bigger question is how compelling are these concerns, especially when they are related to access to our health data. My response and personal take is that it depends. ( typical political response!). While there are pros and cons, the overall benefits out-weigh the risks. For example in many meta ( more than one) longitudinal (over a long duration using the same group of participants) analyses, findings have contributed in discoveries that have contributed in finding pathways and cures to some diseases. And that is a win-win outcome that encourages us to be more flexible with our personal health data and making them available and accessible for research purposes.

Unfortunately current trends are not very encouraging. Regulatory Agencies do have a significant and protective role. The reality is that the challenges are both daunting and monumental. And reluctance by the average patient to make their data public continues to represent an enormous challenge. For example in a recent national population survey conducted by Lake Research Partners for the California HealthCare Foundation, only seven percent of those interviewed had personal health records. And among those who did not have, 75 percent worried about the privacy of their health information: representing the biggest impediment.

And as we continue to resist sharing our health data especially for research purposes, let’s at the same time remind ourselves that the outcomes are for the general good and that in relative terms, the benefits far out-weigh the risks. Hence if you consider yourself one of the reluctant cases, grapple over it again and let cool heads prevail.