Community, NHS, Our Tech

The Role of Patients in Healthcare Innovation

A good story could be one of the biggest attributes to a product’s success. The narrative of any tale plays a huge function in how the story will be received by the public or its target audience. In short, the majority of my work has come from defining the narrative of a piece. It sounds simple, but this part of storytelling is quite possibly the most challenging chapter.

The healthcare industry is currently facing a huge change in perspective, a massively positive change – the role of the patient in innovation. Is the healthcare industry putting one of the final pieces to the puzzle when it comes to the role of patients, by bringing on new storytellers?

I come from a background of communications in the pharmaceutical industry but have also dabbled in more consumer environments such as private hospitals. My work in pharma focused on content such as press releases, data write-ups and core messaging.

Working with private hospitals gave me a chance to reach out to patients, connecting with real people who wanted to get their stories out there in a selfless attempt to help others challenged with similar conditions or had found themselves in similar health situations.

Let’s explore how the current healthcare narrative has been developed and the future of where it is moving towards with the support of patients and their role in healthcare innovation.

  1. Use of Language

In January of this year, John Walsh wrote an article for The Guardian entitled Sickening, Gruelling or Frightful: How Doctors Measure Pain.

The article explains how doctors and patients are disconnected when it comes to describing pain. It turns out that most doctors are taught about the language of pain through The McGill Pain Questionnaire words describing pain are pulled into three categories: sensory, affective and evaluative. When looking at the list of words, many are interchangeable and would not be language used by everyday people. This error in alignment of such a vital part of healthcare shows one of the roles that patients are now playing in healthcare innovation – the often-overlooked ‘narrative’.

We are all storytellers. Whether we set out to write a novel, to create a campaign or a product. We are doing the same thing, developing a narrative to guide us through the story. Without a strong narrative a story can just become a mixed-up jumble of words that bear no resemblance to the picture the narrator/author is trying to paint.

At the heart of developing a good story, we look to entice our target audience, drawing them in and taking them on a journey, all culminating in an informed reader/viewer. The story usually comes from the writer’s personal experience of the genre or theme of the story. However, in the past the healthcare industry has developed products using a narrative that comes from places like, the pharmaceutical industry, PR/marketing agencies or healthcare professionals. While these voices are informed and provide valid messages they are not always aligned with real life experiences.

Perhaps one of the challenges that the healthcare industry is currently facing, is keeping a constant narrative. Collaboration in the development of healthcare content is vital. It enables healthcare professionals to input factual knowledge and for others to “consumerise”, add a real-life experience to it or to explore other dimensions.

Using John Walsh’s pain example, if the McGill Pain Questionnaire had been developed with patient input the language profile would have been completely different, bringing healthcare professionals and patients on the same page. While the above example is very specific to one therapy area, we can look at wider scopes of where patient input is invaluable to the development of healthcare innovation.

  1. Patient Input

As of 2016 the US Food and Drug Administration (FDA) implemented a new scheme called Patient Preference Information (PPI). The FDA noted how useful patient preferences (e.g. patients’ views on their condition, their perspectives on current unmet needs or priorities on for the management of their condition) could be when evaluating the risk benefits of certain medical products.

This step towards patient involvement at a crucial part of development shows the impact that patients can and will have on innovation in healthcare.

  1. Not Just the ‘Token Patient’

As the healthcare industry is realising the powerful role patients are playing in healthcare we can look at social media as a contributing factor. With social media at everyone’s fingertips, patients have a platform to share their views on their treatment plans and conditions, making their voices even more influential.

Social media is also providing patients with intrinsic networks to other patients and patient organisations. These connections give patients the opportunity to speak with people living with the same conditions as them to discuss treatment options or how to manage their condition.

The pharmaceutical industry has of late been inviting more influential patients to attend round tables to give their views on unmet needs. Many NHS hospitals are also taking the initiative to provide patients with the option to take a more active role in their treatment pathways by booking their own appointments.

Here at DrDoctor we believe in keeping the patient at the heart of innovation. Meet Jane, a patient that our platform has helped to empower. Patients are wanting to be more involved in decision making around treatment and this support is giving them exactly that.

By working collaboratively with patients, the healthcare industry could be set to provide patients with more streamlined treatments, rather than just having a patient quote on a website endorsing their product.

  1. The Missing Piece

In a world with most things at our fingertips, we seek experts to help us with our problems. You wouldn’t call a lawyer to help you fix your faulty sink, you’d call a plumber, an expert that could provide you with counsel. This should also be the case in healthcare. Healthcare professionals can provide expert advice in their clinical fields. However, if you wanted to talk to someone about what it’s like to live with cancer, you should go to an expert, a patient.

At some time, all of us will be a patient, this point alone shows the potential power of the patient narrative. With this in mind, we need to harness this perspective to help to inform the future stories that will be told.

Sometimes we may need to be reminded that to be innovative we have to go back to basics and listen to the storyteller.

It is time to call upon the missing puzzle piece, the patient, the expert narrator.