Crash Course in Patient-Researcher Communication


by Veronica Popa, a mother of a child with Allan-Herndon-Dudley syndrome and a member of the RD-Connect Patient Advisory Council.


“The smallest piece of knowledge about rare diseases might be the grain of rice able to tip the scale in favor of us all.”

Communication is simple in theory but way more complicated in reality. In a verbal communication, a simple schematic would be: sender, encoder, channel, noise, message, decoder and receiver.

The Sender:
I’m a mother of a rare disease patient and I have studied and applied marketing and communication for a lot of years. Why is this relevant to this article? Because information is only as valuable as the source is qualified to express it. You wouldn’t take medical advice from a lawyer, would you?

The Encoder/Decoder:
When considering verbal communication, the encoder is the language we speak. The best communication results come when the decoder uses the same code as the encoder. It’s obvious that if you are speaking English and the other person is trying to decode your message in French, the message will be lost.

Less obvious but just as damaging for the message are situations in which the two, sender and receiver, are using slightly different codes. If the sender encodes his message in technical English, for example, while the receiver decodes it in plain English a big part of the message will be lost or miss interpreted (like the English-Romanian version). It’s like being on the right wavelength (AM/FM) but the wrong frequency (101,2kHz rather than 101,4kHz).

The Channel
If you are having a face to face conversation then the channel is the voice. Sometimes, the channel may have a vital role in delivering the right message. The more sensitive the message the more direct the channel should be.

The Noise
Noise is the thing that usually gets the message scrambled so that it may end up meaning a totally different thing at the other end. It might have to do with cultural differences, semantic of the words used etc. An example of cultural difference would be interpersonal distance. Interpersonal distance is different from culture to culture. From Northern to Southern Europe, the distance decreases abruptly. Staying too far or too close to a person may make the person receiving the message uncomfortable and that interpretation may leak into the meaning of the conversation.

The Message
Transforming complicated concepts into bite size information that the patients may understand and absorb should be a key point in developing a message. Some ideas to reach that goal might include:

  1. Use visual metaphors in order to create a visual memory of that information
  2. Make analogies to familiar concepts for the receiver
  3. Be concise
  4. Keep in mind the other’s point of view.

The Receiver:
In patient-researcher communication, the different perspectives of the two (Sender and Receiver) may account for a big chunk of the misunderstandings. For the researchers, the subject in discussion is related to their work so it’s professional. For the patient, the same subject is deeply personal due to the fact that it affects directly their lives. The solution would be a middle ground where both sides would feel comfortable sharing ideas. It might require a bit of empathy from the researcher and a bit of detachment from the patient and a lot of good will from both.

Communication is a very complex process. Verbal communication is only a small part of the way we communicate and is not even the most efficient. Research shows for example that our brains are wired to interpret body language first and to compare that message with the one received verbally. While body language may differ from culture to culture, the approval/disapproval body language is universal.
People might show signs of mistrust, even without understanding why, when the two kinds of communication don’t harmonize. For example, if someone says “We are extremely enthusiastic about this new treatment” while their arms are crossed across their chest, your brain will tell you to temper your enthusiasm since what he is saying might not be the full story.

Arms crossed across the chest represents a defensive gesture but is done unconsciously and the brain trusts it better over the conscious messages which are the verbal ones.

Communication is never a one way street. Both sides should listen as well as try to convey their message. It is also good, in cases where complex concepts are being communicated, to ask questions in order to assess the efficacy of the communication strategy used.

“Research is vital for rare diseases”. This is not a metaphor; this expression is as pragmatic as they come. It is a mantra that every patient or parent or a rare disease child starts absorbing in from the first second they find out their diagnosis. Understanding this makes them all willing to help and do their part to further this process. Sometimes though, bad communication gets in the way and walls are being built instead of trust. If we could rise above our fears, mistrust and personal agendas; if we could build bridges instead of walls, we could aim higher, way…way higher.

Each of us, patients or researchers, holds a piece of the puzzle. We won’t be able to see the whole image unless we work together and give each other a chance to share even the smallest piece of knowledge that might prove to be the grain of rice that will tip the scale in the favor of us all, researchers and patients alike.