Talking. Just straight forward talking to patients, face-to-face. It should be simple right? They are just people, the same as you and I. How hard can it be? The answer is: very hard. We all know that patient research is not straightforward, and I would like to take the opportunity to focus on how we should be thinking about talking to patients, and cancer patients in particular.
It should be stated that the time we spend with cancer patients is not just an hour, or an afternoon, out of their lives – like it might be out of ours. It is precious time, time that they might not have much of left. Although we may appear as temporary, fleeting visitors, our discussions with patients can offer them the opportunity to share concerns, considerations and hopes that they may not have previously been able to talk or even think about. Though we are not counsellors (a line we often need to carefully tread), we can often represent an outlet for patients to vent to; thereby allowing us to create environments where patients are willing, and even enthusiastic, to share what is most personal to them in ways that we could not have anticipated, or may not have felt comfortable enough to ask about directly.
Our responsibility to patients is significant and our interactions with them are often one of the most challenging you will ever have in your market research career. You not only have to meet the aims of addressing your research objectives, but also ensuring you are allowing each patient the space and time to talk through the significant emotional impact that cancer has on their lives. It should come as no surprise that people can often feel overwhelmed and close to tears, if not crying.
Allowing patients to talk, listening to their experiences and fully engaging with the ups and downs of everything that they have been through or are worried about facing, means patient interviews are not about box ticking. If that is the approach you take, you will come away with superficial feedback that ultimately will likely lead to superficial insights. It might sound obvious, but you must invest in the patient in front of you as a person. A person who wants to share not only their cancer experiences, but also share a cup of tea and their day-to-day experiences – which are not always what you may expect! Such as: their sister coming to their house and stealing the patient’s shoes because “she thinks I will die soon, so I won’t need them”. You must be there to talk to them as a person, as much as your primary goal is to hear about their disease.
So, how do you talk to patients? Well, it is not in the same way that you speak to HCPs. Not even close. With the best will in the world, the discussion guide that our clients receive is not the conversation we end up having. Although we meet our objectives and hit all the key points we need to, the language and tone should be sympathetic, to allow a meaningful relationship to flourish in the time we have. It is fundamental to have a conversation, and not an interview. Even a straightforward line of questioning around challenges and barriers for example, that would be considered rote in physician interviews, cannot be asked in the same way with patients.
Challenges and barriers? What does that even mean to someone who is having chemo regularly, in and out of hospitals, who is losing their hair, who cannot go outside for fear their body will let them down, whose relationships with friends and family are collapsing around them? What you want is to understand their worst experiences. What has hit them hard: “How did you feel when your sister said that?”, “How much of a problem is it that you need to find shops where you can sit down?” The small details are important.
I once spent time with an NSCLC patient who was desperate to use her incentive to get a new kitchen floor. Why? For many it might seem a bit mundane. “I want to get something done that I will live to enjoy”.
Time is precious, make the most of it and allow your patients to do the same.
By Kirsty Page (Associate Director)