Drawing the line : When is a condition too sensitive to speak about with patients?

Written by Emma Owen

patient-centre

As researchers working with patients, we occasionally receive a brief for new research about a serious condition that makes us stop and think:

  • Is this appropriate to be seeking these people out for research?
  • Are they going to be mentally and emotionally resilient enough to talk about it in this level of detail?
  • Is it just too sensitive to ask the questions we want to ask?

And these are valid questions that we should always have in mind. In fact our clients are often nervous about undertaking patient research in difficult conditions for these very reasons.

But is there potential for us to be too cautious?

One of the great privileges of working in market research with patients is meeting some truly inspiring people. People with such mental strength, determination and courage, often living in hugely difficult circumstances.

I recently spoke to a lady living with advanced cancer. She was a single mum, holding down a full time job. She would go and have her chemo on a Friday and carry on working through the transfusion. Then at the weekend she would rest and recover, watching movies with her young children, and be back at work on the Monday as usual.

On another occasion recently, I was on the phone with a caregiver, who had to stop our conversation to attend to her husband’s needs.

Given that these are the situations our respondents are dealing with, you have to ask yourself: why do they make the time and effort to participate in market research at all?

And the truth is there are several reasons why patients or their family members can feel a real benefit from taking part.

Living with a condition, or caring for someone with a condition, can be hugely isolating and lonely, for a start. Sometimes even friends and family members may not fully understand the burden.

Even patients with relatively less serious conditions can derive a sense of connection from talking about it. You only have to witness a focus group of dermatology patients, for example, to see how satisfying it is for them to share experiences – the challenge can be getting them to focus on the research questions!

And for patients and caregivers living under the shadow of serious illness, the discussion (usually one to one in that situation) can have an almost cathartic effect.

On a recent project a respondent cried several times during the interview, to the extent that the moderator was worried it had been too much for them. But afterwards we received an email from the patient, telling us how patient and empathetic the moderator had been, and how much they had valued having that conversation. Plus, it is worth remembering that we always put the patient in the ‘driver’s seat’ – if they do not want to answer a question or talk about a subject then we move on. It is always their choice if they want to open up on emotional issues.

But from my experience the primary reason many patients take part is in the feeling that in some way they can contribute to improving the experience of other people in a similar situation; that they can make the daily issues and challenges that they face known to the wider world, so that something can be done to address them.

So many health-related organisations / charities are founded originally by people who have experienced the reality of living with or having a loved one living with a particular illness. It makes sense that in a similar way patients might take part in market research out of selflessness, as an act of generosity.

So when we get a brief from a client about a particularly sensitive condition, perhaps there is another question we should be asking ourselves:

  • Don’t we owe it to these people to give them the opportunity to have their voices heard, to tell their stories?

Yes, there will always be some people who don’t feel like they want to participate.

Yes, there will be situations when it is not appropriate to invite people to a discussion (immediately after they have heard a difficult diagnosis, for example, or at the end of their lives).

But for much of the time in between, shouldn’t we allow them the option to choose for themselves, as long as the tone and approach we take with our invitation to participate is appropriate for the situation they are in?

Let’s not shy away from sensitive patient research, but instead let’s challenge ourselves to do it right, to do it with empathy, to do it with that same indomitable spirit that our respondents display again and again. Let’s ensure that they get a chance to have their say.

This article was written by Emma Owen who sits on The Patient Centre team at Cello Health Insight.

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