What’s all this noise we hear about the voice of the patient?

An opinion editorial from J D Faccinetti, co-founder, on listening and interpreting without influencing  –  Progressive, innovative enterprises have been putting the voice of the consumer front and center in product and communications development since I can remember. For qualitative researchers experienced in non-traditional techniques, the consumer’s voice is nothing new. When my career started in the late ’70s, 1979 to be exact, the “if it’s going to affect people, then you have to listen to what they have to say” mantra was the order of the day.   And since then, my work, in one way or another, has incorporated the use of consumer voices in practically everything, including communication, services, product design, and many other people-facing programs.

I started in the communication business during the years when highly creative advertising shops in Los Angeles, San Francisco, Portland, Minneapolis, London, Dallas, and Boston were redefining creativity and taking business from the old established Madison Avenue agencies. Small boutique shops, like the ones I worked with, were looking for new creative development processes to make messages more meaningful and effective and to break through the clutter.

The consumer’s voice was the purview of what was known as account planners, whose sole responsibility was to tell the design, creative and strategy teams who the customer was, how they make decisions, and, critically, what made them tick. Account planer’s work involved research, discovery, disruption, new ideas, and turning problems upside down to find creative, practical solutions. For planners, it was not only necessary to understand what people said but critically how they said it, including the texture, tone, color, and manner of the language. Recognizing what people had not said to probe and learn was equally important. For me, the insight on how to influence the creation of those brands, messages, and programs should mainly come from the people it affects and those closely working with them. That thinking drives the work we do at PWN.

Voice of the customer programs generally seeks to understand people’s experiences, needs, wants, expectations and preferences. Utilizing this insight provides a tangible advantage in understanding consumers’ experiences. But, importantly, it also provides the industry an intimate view of the patient that should drive critical differentiating factors to help build trusted, long-lasting relationships between a brand and its stakeholders.

But just getting the proper insight is not enough. As the health care industry, specifically those operating in the rare disease space, develop therapies, support mechanisms, and services, other critical questions emerge: what will you do with it? What will you use it for?

There is an abysmal difference between listening to the patient’s voice and actually doing something with it; that difference is noticeable and transparent.

Today, the patient’s voice is very much the topic of conversation. We are thrilled to see healthcare stakeholders such as the FDA and medical and industry enterprises focus on giving people a seat at the table, so programs that affect support and therapies are designed with their voices at the center of it all.

However, as I look at it today, I worry that many of these research initiatives are riddled with flaws. Here are a few worth noting:

    • Sample bias; who are we talking to? Talking with advocates and not patients?
    • Question bias; how are we asking a question and influencing answers?
    • Research design and techniques; are we asking the right questions?
    • Research strategy; what single key question is driving the research plan?
    • How do we interpret that insight, and what do we do with it?
    • Are we using the proper techniques: what about non-traditional research techniques like ethnographies, observational studies, usage studies, projections, in-depth sessions, and others?
    • Is there support group bias or group leader influence?
    • What about the research firm’s experience in a given category?
    • Lack of texture and context in the patient language; survey research, while adequate, can be limited and filtered and fail to provide the necessary depth that drives effective decision-making.
    • Inadequate representation of the broader patient base. Patients that belong to social media groups, or other groups, are often biased toward achieving particular outcomes. While they provide essential, critical insight, they may not always represent the total patient population.

We continually listen and interpret what we hear to understand our audience and drive our content, public policy initiatives, and other programs. We believe we must include the patient voice in all agendas focused on improving well-being. Things like new medication and therapies, access, public policy initiatives, mental and emotional health support, early diagnosis, awareness, education, wellness, and most critically, actions to influence decision-makers to pass effective reform so that access issues – costs, insurance, authorization, denials, etc. – will be a thing of the past.

In the coming days, weeks, and months, we will ask you to engage, participate, and let us hear your opinions and attitudes.

We will ask you about the problems we should focus on to have the most impact on well-being and quality of life.   There will be no prescribed formats. We’ll ask you survey questions, and we’ll ask you to write your thoughts in your own words. You will be able to provide your thoughts anonymously if you so prefer. No restrictions.  Also, through our live talk sessions, we will ask you to tune in, join us at the studio and call in with comments and ideas. In short, we will ask you to get involved and tell us what you think.

Thank you, and stay tuned!

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