Do Google It: The Benefits Of Patient-Led Advocacy

Running a foundation for a rare disease isn’t always an easy thing. I receive emails daily asking me for information about Twin Anemia Polycythemia Sequence, a rare disease of monochorionic twins affecting just 3–5% of pregnancies.

The questions I get range from “I’ve been told I have this — but I didn’t understand what it was — can you explain it to me?” to “The doctor told me my babies are going to die. Is this true?” It highlights a crucial missing link — and one medical teams may not be aware of — communicating a diagnosis to a patient so they can understand.

A Diagnosis And Doubt

One of the things that are often told to patients after receiving a diagnosis is “Don’t Google.” Don’t ask the internet, don’t ask the mom groups. To me, that’s like telling a child not to touch the plate of cookies on the table while your back is turned.

As a patient, we see you as our health lifeline. We trust you; we give you one of our most precious things — our health. We realize that you’re under time constraints. Still, sometimes when you’re delivering a life-changing amount of information — we become overwhelmed, sometimes lost. Quite often, we come out of the appointment only absorbing the worst-case scenario.

And then — we’re told don’t Google. It’ll make you feel worse. Stay off the internet, out of the mom groups; they can’t tell you anything more than I have. You won’t get reliable information.

But here’s where the problem happens. We want more information, but doubt is cast on our only external sources of information.

Reliable vs. Unreliable

Not everyone can read medical journals. Let’s make that clear, to begin with, and often with a difficult diagnosis, this is the only reliable information. Medical terminology and jargon often lead to confusion and misinformation. The directive “don’t Google” is a protection mechanism. That is a noble and compassionate thing we appreciate about our medical teams.

And let’s face it, “Mom” groups are the butt of jokes and sometimes the source of misinformation. As a mom, I’ve often rolled my eyes at the plethora of misinformation out there! There are so many opinions on vaccines, safe sleep, infant feeding — and science often takes a back seat. Ideas and pseudoscience usually take over in online echo chambers. As a care provider, you want to protect us against this.

Do no harm is your fundamental belief. Protect at all costs. But sometimes, there’s a need for more information from your patients, and there’s nowhere they can turn.

Safe Spaces

Within the clusters of mom groups and medical journals lies the middle ground. Reliable, safe spaces and websites that are dedicated to helping patients. They want to break down the barriers between research and patients and help understand a diagnosis.

Run by passionate advocates and sometimes even medical professionals, these groups stay up to date with research and volunteer their time to help others. It’s important not to dismiss all external groups and associations. Obviously, there are many out there, but reliable groups exist.

It’s natural that after a difficult diagnosis, patients are looking for places to turn. From personal experience, I can tell you that a patient will walk out of the office most of the time, remembering only the worst-case scenario. They’ve been confronted with a lot of information, and as they process this, they will come up with more and more questions. Telling them not to Google or turn to safe spaces with peers means that they have nowhere to look for empathy or compassion, or reliable information. They can feel lost, lonely, and detached from the situation. Do no harm becomes unintentionally harmful.

Communication Is Vital

A very kind and wise doctor once told me. “As patients, we sometimes need to remind doctors they don’t know all the answers.” This sometimes extends to the advice given with the intent of protecting patients. Humans, by nature, are curious and look to find their tribes in times of difficulty. Telling them to ignore their instinct creates internal conflict.

If you have given a patient a problematic diagnosis, make a note to contact them within a couple of days. They will have more questions for you, as the information “dust” will have settled, and they are beginning to find clarity.

We know also that you run to schedules and that this is often outside the scope of office hours. In these days of electronic communication, why not invite them to email you when they want to ask questions?

Those who have broken the cardinal rule of “don’t Google” may also want to verify the information they found. Patients feeling alone do seek out their tribe and seek the company of those in a similar boat. This is also an opportunity for you to verify the legitimacy of the information they have sourced.

There is also the opportunity to provide print media like brochures or magazines or give legitimate online sources that do fall within the realms of useful data. Interactive options can give a sense of understanding and better information retention

Legitimizing Online Sources

Not all mom groups are the same. Patient-led advocacy groups can provide the very things that your patient requires — peer support, a better understanding of their situation, and breaking down the barriers of medical jargon. Many groups work with researchers and doctors, creating a space for up to date, accurate information. In some cases, these groups can even have access to research as it happens.

When your patient talks to you and says, “I reached out to this group, and they say this,” It’s an invitation for you to do some research. Look at what they are offering your patient on their website, join their group (most evidence-based groups welcome this!), and discover their purpose. These groups are proud of their affiliations and want to connect with you as well.

Facilitate conversations with your patients and find out their data sources. Discuss this with them. This builds their trust in you and their confidence in the fact you are willing to listen. We want to build trust and respect with you — as you are in charge of our health.

A Final Message

Patients ultimately respect and trust the information given to them by their care teams. Patient-run advocacy groups who respect research and science want to work with you because we have a mutual goal — your patient’s health and emotional well-being.

We also want to work alongside you. We want to be the place your patient goes for good, up-to-date information about their diagnosis. Patients must hear shared experiences as well, so they don’t feel alone in their diagnosis.

But most importantly, we want to remind you we are all human. Curiosity, companionship, and a sense of connection are essential to us.

We know you have guidelines to follow, and that is part of your role. But remember that guidelines are just a standardized set of recommendations for a minimum legal standard of care; they aren’t the rule. A patient who asks questions isn’t questioning your authority. They’re seeking more information, and that can be handled successfully with peer support.

Let’s break down the stereotypes of white coat syndromes and mom groups together. Patient-led advocacy groups are vital to support your role as care providers and help build trust together.

My own personal experience of creating a community on Facebook for Twin Anemia Polycythemia Sequence, and taking that one step further into creating a foundation for TAPS could not have been done without the incredible support from Dr. Enrico Lopriore, Dr. Femke Slaghekke, and Dr. Lisanne Tollenaar, all amazing doctors and researchers from the LUMC, in Leiden. My partners in crime, Dr. Lauren Nicholas and Dr. Rebecca Fischbein epitomise the spirit of collaboration and willingness to make a change for patients in the world. But the inspiration for this article comes from a doctor of tomorrow, Roshni Wani, whose passion for creating safe places for patients and doctors is inspiring, as is her incredible support through the writing process and her sharing of ideas. Thank you, Roshni.

Stephanie Ernst

Stephanie Ernst

Who am I? I'm Stephanie Ernst, TAPS nerd and founder of the TAPS Support Foundation My passion for raising awareness for Twin Anemia Polycythemia Sequence comes from my own TAPS journey. My daughters were born at 31 weeks at the LUMC in Leiden, and my mission is to support research into TAPS, as well as connecting families diagnosed. Everyone should have access to the latest information and research about TAPS so they can advocate for the best level of care. And most importantly, no-one should ever be alone in their TAPS journey. Find our Facebook group here.

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