Patient Destiny

Do Patients Need Access to their own Health Information?

This was the question at the Great Debate - at the eHealth Conference here in Quebec City! As mentioned in my previous post, I was invited to debate with three other panelists (all physicians) about the pros and cons of this question.

I must say that it turned out to be a very good discussion on many of the topics that we all need to address. At first, the question seemed very simplistic and even paternalistic in the sense that patients may not have the maturity to access information and therby effectively weigh all of the data and implications. I was even afraid that somehow the question could get very twisted and not even discuss the basic points. But all my worries were for naught!

Before the debate even started, the question was posed and the audience was asked to vote (approximately 1400 conference attendees). Very surprisingly, the vote pro was almost unanimous! I thought that we have won the debate already - as long as I do not not screw it up! It raises the question though in that if everyone agrees then why don't we have that now!

The Great Debate

Within the week, I will be attending a national conference that is held annually for the society of Medical Informatics in Canada. This conference has a bit of a history and, as such, is referred to as either the eHealth Conference or COACH. It is usually held in alternating years at the two ends of the country - between Toronto and Vancouver (or Victoria, BC). This year the conference is held in Quebec City (May 27-30).

One popular feature during this conference is the plenary, the Great Debate. In the past, there are been a number of luminaries asked to speak on a variety of topics in a debate format! In recent years, there has been good discussion around Electronic Health Records and whether they are in fact the Holy Grail!

This year, the great debate question is: "Be it resolved, patients need full access to their electronic summary health record in order to achieve substantive improvements in patient safety and reform of the health system”. And I have been invited to be one of the four panelists for this debate.

We still need more money in IT

A recent announcement by GE indicates that they believe the future of healthcare will be VERY much integrated with technology. In fact, GE has committed to an annual budget of $1.2 billion to spend on research and development in the areas of eHealth and e-records.

This is great news! This may seen to be unrelated to Patient Destiny, but actually, this is a critical step! As we've discussed, patient empowerment in a paper world of healthcare is just not feasible.  There are too many fragmented pieces and no coordinating function that could even contemplate organizing this.

This then infers that we have e-records! Unfortunately, there has been no easy steps or even widespread adoption of IT in healthcare. Thus the whole patient movement is tied behind the EHRs and other investments that need to put the right infrastructure in place !

There must be more to Chronic Disease Management

The last time we chatted about my personal health experiences, I shared my time where I was waiting for a bed in the Emergency Department. At that point, I was extremely frustrated as I spent almost 3 nights in the ER. However, that was nothing compared to my latest episode - four full nights in the ER!!

This is so hard to believe that I think I was in shock for the first 2 days. The question of course is - why does this happen?

First, the hospital is full and there are no free beds. This may be true, but only to some extent. Often there are beds, but not enough staff to manage the patients in the beds.

Second, the big users of the system, the 3C's - the consumer who have chronic conditions - cannot access the system in a straight-forward manner. So the ER becomes the one-stop shop: primary care, emergency care and chronic disease maintenance!

Patients Win Right to Know!

The Ontario Liberal Government and the Minstry of Health (MOH) just passed legislation that patients have won the right to know about doctors' performance in order that we can make more informed choices regarding our healthcare. At the moment this pertains only to provider performance with documented cases where the provider (e.g., doctors, nurses, dentists) has been proven guilty!

At one very important level, this is great news. The patients are finally being seen as a worthy stakeholder within the healthcare system and, as such, deserves to have information so as to help in the management of their care! As we have been preaching, the patient needs information is so many areas - but this is a good start. If we leave that for the moment (and for future posts), there is still the concern that the patient will be able to both understand and act upon the information that we receive. This will require much in the area of the development of an interface to information and the creation of decision aids.

Are Paper Documents More Secure?

In a recent study that was just released by Modern Healthcare, respondents stated that they perceive paper health records to be more secure. In terms of ease of access and efficiency gains, the electronic chart is the preferred method but re privacy, the belief is still strong that paper is better.

This perspective is just so puzzling to me!? I realize that many are still skeptical when it comes to EHRs and since we have not seen widespread adoption, there are still many unanswered questions. However, we know clearly from other industries that electronic access brings with it so many security features that paper files just cannot match.

One such feature is the audit function. When anyone accesses a patient's file, an audit trail begins. So even if someone was able to breach the system by by-passing account numbers and passwords, there would still be evidence that the file was compromised. This may be after the fact, but would certainly speak to the development of further system enhancements. In a paper system, any one could look at any file and no one would ever know.