I’ve written before about the importance of listening. It’s tempting to think that “communication” is all about talking, writing or tweeting, but listening is every bit as important, if not more so.
We’re running a patient listening initiative for one of our clients here at Dovetail. The aim is to inform and improve their patient support materials.
By rethinking our approach, we’ve had some challenging conversations and surprising outcomes. In this post, I’d like to share what we’ve learned, and why it’s essential to listen to patients in the right way.
The purpose of patient feedback
Most of us working in and with the pharma industry spend a lot of time with healthcare professionals, trying to understand their views, and the challenges they face in their roles. We, rightly, seek their advice as we develop our value propositions and campaigns.
But we often miss or pay lip service to the patient perspective.
And without genuine feedback from the people who are taking medicines, having operations or living with long term conditions, we’re missing an essential part of the jigsaw.
There are all sorts of barriers to medicines adherence we can’t know about without consulting patients themselves. There could be emotional, cultural, or religious issues around how some medications are administered, for example. People on treatment in the real world don’t always respond in the same way as participants in a clinical trial.
Listening to patients’ voices can help us refine the advice and information we give them. We might write a patient leaflet sitting at a desk, but needs to make sense in the real world, to a person sitting on the loo or rushing to get ready for work.
How to gain patient feedback
The most important thing is to try and put yourself in the other person’s shoes. Patients are people, not health conditions.
When recruiting, be clear about expectations and compensation.
Write the participant information and consent form clearly and simply. Not because people are stupid, but because it’s polite: the people you’re recruiting can’t be expected to understand your organisation’s jargon.
For people to share honest feedback, especially about sensitive or personal issues, they need to feel comfortable and supported. The process of setting up an empathetic space begins with the very first contact and continues all the way through to the thank you note. Think about the whole process and map it like a user journey, with empathy as the guiding principle.
Think about the format – is a focus group suitable, or would people open up more in a one-to-one interview? And who should facilitate the interaction? Here at Dovetail, we use highly skilled specialists for our patient interactions. People with refined interpersonal and listening skills are essential.
What to expect from patient feedback
Here’s the thing. If you get the set-up and people right, patient feedback should be tough to listen to. Living with a long-term condition like diabetes or inflammatory bowel disease can be gruelling. Having cancer is terrifying.
Bear in mind that people often work very hard not to inconvenience or burden their healthcare teams. In our experience, participants sometimes share things they’ve never told anyone before, simply because they’ve never had the space. Prepare yourself to hear the truth about the challenges of their condition, how they manage it and how it makes them feel.
It’s upsetting to hear how long it took someone to get diagnosed. How they can’t get to see their consultant for months. How the treatment affects their personal life. How the pretty pictures in the patient support leaflet provided by the drug company bear no resemblance to the messy and painful reality of their lived experience.
But it’s essential that we do listen because it’s only by understanding the reality that we can develop patient support materials that are fit for purpose.
We might need to get past our own uncomfortable feelings in the process. And if that leads to better information and outcomes for patients, we’re ready for that here at Dovetail!
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