Patient Destiny

Patient Destiny goes webcasting

The American Medical Informatics Association is a large group of healthcare professionals that are trying to advance the eHealth agenda. Their mandate is to help support the effective implementation of IT systems throughout healthcare. Even though they do not focus on patient's access per se, they certainly are very important re Patient Destiny due to the fact that patients will never access information and get their voice heard without electronic records.

That being said, Patient Destiny has been invited to be the leading speaker in a new Podcasting series regarding patient access!! It apppears that with enough hard work, patients as a stakeholder group within the electronic health record development are being accepted as critical components which must be consulted in order to achieve success.

Starting May 7 2007, the podcast will be available at the AMIA website.

Patients have rights and opinions

One of my biggest lessons learned about being an informed patient is that even though you may be informed, voicing your opinion is not that easy! Starting out on my quest years ago, I made it my job to learn all I could about my illness (Crohn's disease) so that there would be a number of benefits!

These benefits would include: understanding symptoms, learning about treatment options, knowing more about what to expect around my diagnostic tests (painful versus discomfort versus accuracy), identifying health indicators that would help me manage my health on an ongoing basis! All of these sound very reasonable outcomes from working to become more informed.

The lesson that I learned is that there is a big difference between being informed and being "involved" in the management of my care. I then had to work very hard to get my voice heard even after I had made the commitment to learn more and gain credibility.

Patient - first and foremost

I am a big patient advocate - mainly because I am a patient first!

And that's where I have been the last couple of days - spending 72 hours in an emergency department just to get the right procedure done - and of course, by the right people. I know that just in this short instance, there were a number of times that a lot of things could have gone terribly wrong and that would have extended the incident and made it worse for everyone.

For example, one test got confused with a test that was in the Hospital's IT system for 2 months down the road!! The staff saw the request, figured the date was wrong and were sending me to this test.

IT all comes down to people

I have said it in many a venue relating it to many, many things - it always comes back around to the people. Good people find a way to win even in bad situations ... and perfectly aligned scenarios can fail miserably if the initiatives are managed by not-so-competent managers. I am even starting to wonder if all of that business school and management theory is relevant in the end - but I will leave that discussion for another day ... at least.

In a recent article in ComputerWorld Management, they discussed what is plaguing eHealth initiatives - this is important to us because without eHealth Innovation, there will be no patient e-records and then there is no way the patient can gain "information access" into their own healthcare system - and a big part of it all is the people and the implementation that comes from their involvement! In the end, there has been much industry frustration leading to this quote: "Welcome to the world of EMR, where the best technology and the best intentions come smack up against the inertia of human nature!"

UPI - What is UPI? Is this important?

Yes - and I cannot tell all of you just how happy I am to see discussions on this topic in the media at this time. An online journal, Government Health IT released a story about how can we be sure to find the right "George Foreman". There is truly a long story about the famous boxer that can go on and on but really just disguises the real point of my message, so I won't get into why George himself is important! Suffice it to say, George, the dad, had five George's, the sons and, as you can see, he named them all George - yes, believe it or not. It appears that he had the very small version of the book entitled "Favorite baby names" in his hands every time he became a father. But he does serve as a good example about identification and accuracy when it comes time to shout for dinner!!

In healthcare, we have the issue of matching records from a variety of sources - mainly because our delivery system is just so fragmented! The good thing is that we have a lot of chaoices when it comes to receiving care; the bad thing is that the information about you, the patient, resides in all of these choices (albeit, some encounters may supply more meaningful infromation than others).

Step 4 - Taking Stock

In the past, we have discussed the steps on the Path to Patient Empowerment where to date we have got up to step 3 - speaking with your physician. This was an important step as it gives both you and your doctor(s) the same message: this is my life and my health and I want to be involved in managing it. Not because you, the doctor, do a bad job, but rather that with all that the doctor has to do, he or she surely can not do it as effectively as YOU, the patient!

To this end, step 4 is all about taking stock. What is your healthcare status today - right now. This requires that you be totally honest with yourself and evaluate your overall health situation. It can be that you are doing very well or it could be that things are actually not looking so good. This is not as important as being totally honest with yourself.  I believe that the worst sin we commit on ourselves is when we lie to ourselves.  We position things as not so bad or it's okay, when really we know deep down that changes are needed.

Patient Empowerment vs Privacy

Over the last number of years, there has been more and more concern over the movement to electronic data transfer and the storage of all kinds of personal data...this is our trend in society - far and above anything that is going on in healthcare.

In all of these industries, the concern over security, and rightly so, has become commonplace as a result, and often is the focus of much IT spending and research. In the financial services industry, for example, there is a need for not only  an actual, but also the perception of, a tightly secure system. Yes, there may be breaches must they must be perceived as isolated cases - and there must be rememdies in place to compensate individuals when these security issues arise.

Of course, another issue that stems from all of this is privacy. There are a number of different sources of financial data - from credit bureaus, central government re taxation and all of the individual credit granters. Different countries have their own policies about access to personal financial information.

High Tech is High Tech!

A lot of buzz is surrounding the actions of one of our fellow bloggers! DiabetesMine blogger, Amy Tenderich, wrote an open letter to Steve Jobs of Apple to use some of the innovation spirit and resulting commerce to challenge the healthcare system into building better technology for patients. Wow - isn't that just great!!

While this may not relate to patient empowerment in the sense of ownership of health record or partnering in decision making, it certainly speaks to patients having a greater voice!

Obviously, we need more leadership from the whole patient stakeholder group. ... and that means everyone! We need more people offering ideas and suggestions re changes in healthcare. As we interact with the healthcare system, we cannot help but think of ways that it frustrates us.

A Review of the Landscape

When one is looking at change many questions arise: why?, why now?, change to what? To answer many of these questions, we need to know what others are doing to give us all a sense of performance evaluation.  If we find out that we are "leading the pack" or are performing at a quality that puts us with the front-runners, then very little change may be warranted. If however we find that we are way behind - or even worse - lost track of the pack, then change is in order.

Patients accessing their own record is still a topic area that is in its infancy - in terms of research literature as well as established protocol. This means that there are few places that we can turn to so as to measure ourselves with or against. One of my doctoral students is working on a project that will provide a literature review and environmental scan reporting on progress in this area. I will report in future blogs what is happening and where. More importantly, we will also be able to see how well they are working and get a sense of patient satisfaction.

lOOk - gOOgle's here!

The entire Patient Empowerment movement received a big boost as Google has decided to invest greatly in the healthcare vertical (or industry). Google has announced that they have restructured their "search engine" architecture to help support patients in the search for health information.

While Google has been focusing on healthcare for some time, they have recently identified four topic areas that consumers search for information on:

•    Searches on symptoms
•    Searches on a particular illness and treatments available
•    Searches for experts in treating a particular illness
•    Searches on how to live with an illness or disease

According to their report that was presented at a conference in Washington at the end of last week, about ten months ago, Google went on a mission to determine the best source for expert health information - their search engine now prioritizes according to their findings. They are continuing the research to improve their "search" but stated that they plan to "take their time" in order to get this right!