For many years I’ve heard from patients across the country with questions about their healthcare. Not medical questions; rather questions about something in the healthcare system that isn’t working the way they want, or expect it, to work. They can’t get their doctors to answer their questions, or the insurance company has turned them down for a test or treatment, or they got a bill they didn’t expect – or – ______ (fill in the blank with hundreds more questions!)
There is one theme that runs through every question;? that is – a lack of trust. In every case, the reason they are turning to me is because they don’t trust either an answer they’ve been given, or they don’t trust the person or entity who gave them that answer, or both.
A trust gap has developed, a chasm really, that’s growing wider, between patients and the traditional system of obtaining healthcare. The more they need, whether it’s more medical care or more answers about that care, the less they are getting. That widening chasm represents rationing – of care and communication. The more care and communication are rationed, the more frustrated patients become and their trust erodes even further.
When vulnerable people can’t trust, then they become desperate. That’s often the point when they go in search of someone to help, and more and more frequently, that person they are hoping will help them is one of us – a patient advocate. Knowing that, this next statement will make perfect sense to you: As a patient advocate, perhaps the most important thing you can give your client is a sense of trust – trust in you and what you can do for him or her. No, you can’t make clients trust their doctors or their insurance companies, but you can help them trust you. That needs to be the first step in engagement between the patient and the advocate.
This concept became clearer to me recently when I was contacted directly by one of the patients I mentioned at the beginning of this post. We’ll call her Matilda. Matilda and I have actually carried on an exchange of ideas for several years – to help her try to get the diagnosis that has eluded her all this time. She has become fairly savvy about tests and lab values and differential diagnosis. She’s a good advocate for herself, but roadblocks continue to be put in her way. Matilda has been frustrated by the system for years.
Unbeknownst to me, Matilda contacted one of our AdvoConnection member advocates (we’ll call her Selena) to inquire about engaging her services, in hopes of getting that diagnosis she needs. There was an exchange of ideas between them, and then Selena told Matilda what her services would cost, and that Selena would need copies of Matilda’s medical records to get started.
I do not know what other conversations took place, but Matilda emailed me, very upset, saying that Selena expected her (Matilda) to pay for those records by herself AND that she didn’t really know what it would cost in total, because Selena wouldn’t tell her. Not only that, Selena expected Matilda to sign a “HIPPA” form [sic – should be HIPAA] which was supposed to protect Matilda, not get her upset!
Now – we, as professionals, understand exactly what has taken place. Clearly Matilda doesn’t understand that she will have to pay to get copies of her records, nor does Matilda understand that Selena can’t possibly give her a price on the work until the two of them agree on a scope of work. Without the records, Selena can’t begin to outline a scope of work that she can price. Further, Selena needs Matilda’s permission to review those records and perhaps, at some point, discuss them with Matilda’s doctors.
However – what has really taken place here is that Matilda now feels as if Selena is ONE MORE PERSON WHO WORKS IN HEALTHCARE SHE CAN’T TRUST. Through no fault of her own, Selena has gotten lumped in with a system and judgment she’s not part of.
So what should have happened differently so Matilda wouldn’t feel so distrustful of Selena> There are actually a handful of things that Selena could have explained, like the process for getting a hold of medical records and why Matilda would have to pay for them, or the purpose of the signature on the HIPAA form, or at what point Selena would be able to give a more solid price quotation. Or, perhaps Selena could set up a review system, such as charging $350 to do an assessment of Matilda’s situation. Then, if Matilda would hire Selena to do all the other work as they would agree on, then the $350 assessment fee would be subtracted from the eventual contract.
Bottom line, what Selena owed Matilda was a reason to trust that she, Selena, would take the time to explain, and could explain in clear, understandable language, what needed to be done and how it would be done – all those things that no one in the traditional health system is doing for Matilda now.
Do you approach each of your clients with the realization that you must instill trust in your relationship and work> Do you explain things potential clients need to understand so it’s clear to them and won’t frustrate them? Do you manage their expectations about your role in their pursuit of what they need so you won’t be lumped into the same chasm of services they are getting from the rest of the system?
If you gain trust, then there’s a good chance you’ll gain a new client, too.