The Patient Perspective on Integrated and Interoperable Medication Lists

As many know, the Office of the National Coordinator for Health Information Technology at HHS ( directed by Dr. Vindell Washington) has been working on the whole vexed problem of integration of data from different providers. More information on the agency is here.

In particular, it has been focusing on one of the most urgent problems from the point of view of us patients is the lack of any ability to get integrated information on all of our medications, regardless of who prescribed them, and where we obtained them — let alone what we should be doing with them, and when.  This is obviously a particularly complicated and significant for those of us with multiple conditions.  (By the way, almost all seriously ill people are considered to have multiple conditions.)

So it is exciting that there is now a focused effort at HHS, known as the MedList Project, to develop such online tools.  It takes no great  genius to recognize the huge potential to improve patient care, reduce errors, reduce unnecessary costs, and minimize adverse drug interactions, that the initiative offers.

So, I was excited and honored to be part of discussion organized at HHS to help them find out what patients wanted and needed.  It was one of the most exciting and stimulating discussions that I have been in for a long time.  Here are some of the ideas that really struck me.  Of course, many may not be practicable or just not happen, but it is good to know that thinking in a broad and visionary way is happening.

Making sure that the list is truly integrated — that it includes information from all providers and prescribers, and that it includes nonprescription drugs.

Including updating tools so that information about updates flows routinely to all who need to know about them, and so that accuracy is maintained.

Eliminating the current endless repeated updating of the prescription list every time we see a provider anywhere.

Letting users change the display format of any medication list, so that they can see it in a table, in a list, by when in the day to be taken, the cost to them (or the insurer), by type of likely side-effect, etc.

Making it easy for users to find and deal with the many different names that are used for drugs.

Integrating the descriptions of the pills and packaging, and indeed including a tool that lets you put the drug in front of the camera of your device, and get a full read-out on it. (Imagine how many misuses of medication that might help avoid.)

Including tools so that we can see options for the scheduling of our medications as they relate to meals, activities, and sleep.  Right now, if you are lucky, one of our providers sits down with us and goes through our “day,” making suggestions, but it is an informal process and likely to be ad hoc.

Including in the tools an ability to ask for suggestions for scheduling alternatives to deal with particular problems.  For example, if you feel nauseous before or after a meal, or if exhaustion as a particular time is a worse or more significant problem, then you could tell the tool, which could then make alternative suggestions.

Having the tool notify providers when you change your schedule or what drugs you take.

Integrating the tool with the smartphone reminder and confirmation systems.

Including links to all the information on side effects and instructions, and providing links so we can ask for more detailed instructions.

Facilitating integration with pharmacies at medical institutions and the retail industry.

Facilitating integration with menus at residential communities to watch for possible issues.

Including tools to report possible side effects, and perhaps even to allow patients as well as experts to look for patterns in such reports.

In any event, I hope that folks agree that these would make a huge difference.  Please make additional suggestions in the comments section below.  I will make sure that they get to the appropriate folks.

In any event, it seems to me that this is a fabulous partnering opportunity.  First, we, as patients, can help make this as good as possible.  Secondly, it will provide us for ways to input data that will help the professionals make the system better.  Thirdly, on a case by case basis, it will help us partner with our own providers to improve outcomes.  Compare an earlier blog on Advanced Care Planning Tools.