Fixing the System is a new series, in which I describe big and small “asks” — things that would improve my ability to access the medical care I need.
However. These may seem strange to someone who has had a more common, well-researched, well-funded disease with active advocacy orgs. There is a vast difference in the way the system works for different patient groups.
Let’s start with something small —
An Accurate Database
…..of the diseases and conditions each provider is able and willing to treat.
Example:
- Patient is already diagnosed with Ehlers Danlos Syndrome, but wants to find a doctor closer to home.
- Patient tries the “find a doctor” search for both med systems area — no results.
- Patient asks PCP to check whatever they have access to — no results
- Patient hires very expensive patient advocate to leverage the PA’s network.
- Patient finds appointment in a nearby city, 45 Minutes away.
At this point, you will probably assume that: there are just no doctors in this city that treat EDS.
Nay. There is, in fact, no way to know.
The database does not hold enough info — for example: the doctor treating EDS in this example is not in his own system’s “find a doctor” database under EDS.
The provider databases of most medical systems are incomplete and inaccurate. There is, in fact, No Way to know if there is a doctor in my city is treating EDS.
It would be – in a very literal and real sense – more effective for my PCP to wander down to the break room, put a note on a bulletin board, and hope someone sees it and gets back to her.
The only options for finding one:
– hiring an independent patient advocate — but it can’t be “any” advocate — it has to be one with an established network in the area for that specific disease.
– the national advocacy website — but this is highly dependent on doctors reaching out to the org and agreeing to post their info. There are many doctors who stay under the radar because they know they will be flooded with desperate patients and would soon be unable to take on new cases.
– local patient support groups — this is by far the most helpful. These groups are compiling detailed information on doctors; documentation of instances where providers were or were not helpful, in what areas each doctor is able to provide care, limitations and suggestions of where to find additional support….
– Note: these lists also note where NOT to go, with detailed descriptions of encounters that, frankly, should worry every large med-system administrator… but that is a post I’m working on for another day.
The other issue is knowing what a doctor will NOT treat.
For instance, most doctors who treat Mast Cell Activation Syndrome are allergy doctors. But most allergy doctors are not willing to treat MCAS. Even doing it the slow way – one patient calling each allergy doctor in the database to see if they will treat it – does not work.
For example:
- A friend recommends an allergy doctor because “she is smart and good”
- Patient *knows* that it is very possible this doctor will not treat MCAS
- Patient calls the office to check
- Patient is assured by staff that “all of our doctors are very good and of course will want to help with something related to allergy/immunology”
- Patient KNOWS BETTER but still goes to appointment
- Patient is charged $50 for a an incredibly unhelpful and unprofessional appointment because the doctor is “tired of people asking about MCAS”
You have no idea how many patients have had this type of encounter, and how many times it has happened to each patient. It could be prevented by a single note in the database:
This doctor is not accepting patients for diagnosis or treatment of MCAS.
To summarize:
On behalf of patients everywhere, speaking to every med system in these United States — I am begging you to make an accurate, detailed database of your providers and, if unwilling to show it to patients, at least make it available internally.