Why the ‘voice-of-the-patient’ matters so much

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It’s nearly thirty years since the Picker Institute developed the principles of patient centred care, which have since become the cornerstone for structuring patient engagement in both the US and Europe. The first of the Picker Framework’s 8 Dimensions sets the direction:

  • Respect for patient-centered values, preferences, and expressed needs, including an awareness of quality-of-life issues, involvement in decision-making, dignity, and attention to patient needs and autonomy

The idea behind patient-centred care was simple – aspiring to quality of care as an outcome had to include both what mattered to patients, as well as a commitment to clinical excellence. That meant involving, respecting and engaging with patient views.

However, in the often frenetic pace of today’s healthcare environments, the commitment to including patient values and preferences can be severely tested. Indeed, with the Care Quality Commission’s 2015 finding that three in four NHS hospitals are failing even its core safety standards, it is hard to believe that adherence to patient-centred values is consistently embedded either.

It’s our belief that many qualitative healthcare studies, like the environments they seek to improve, can be compromised by standardised, formulaic methodology and rigid adherence to objectives set in stone. It’s why we conceived Customer Faithful as a research agency that really did make the people we were researching the ‘hero’ – the experts in their lives, whether as patients or carers, children or parents, employees or retirees – so many roles and responsibilities, so often intertwined.

So how can healthcare providers and patients use listening-based research techniques to  include and act upon patients’ views and feelings?

To inform our work and our thinking, we try to be always on the lookout for ideas that can support our ability to hear the patient voice. As Stephen Covey famously said: “most people do not listen with the intent to understand; they listen with the intent to reply”.

Here are three practical examples of how healthcare is either tuning into the voice-of-the-patient, or is developing opportunities to do so. It has inspired and extended our thinking, and hopefully sharing it here will widen its influence still further.

At the very least, we hope it encourages those involved in the development of patient-centric care to not just give ‘sanctuary’ to patient expression, but to act on it and broadcast its value.

  • ‘what matters to you’ listening initiatives – a team initially comprised of public volunteers, nurses and staff from Healthcare Improvement Scotland began a campaign to encourage health & social care workers to have conversations with the people they support. Originated in Norway, the ‘what matters to you’ campaign now extends into England, Wales, Eire, Denmark, New Zealand, Australia, Brazil and beyond. At its core was the belief that by investing a little dedicated time to truly listen, to understand people’s personal preferences, fears and concerns, delivering high quality compassionate care could be tailored, even personalised to their needs. The TEDx presentation below gives a flavour of its potential to change peoples’ lives and their health outcomes….

  • being open to wider forms of patient expression – most of our healthcare communication between clinician and patient defaults to a linguistic description, be it spoken or written. But are words able to convey all that the patient feels?  In a research study of chronic pain, participants were able to include objects in their descriptions, including drawings, photographs and soundscapes. Such support enabled participants to step outside of traditional hierarchical scales in order to describe the tensions between immediate/chronic, owned/disowned and internal/external. Such approaches can help clinicians understand not simply degree of pain, but its impact on mental health and adherence to treatment. It also has considerable application for pain assessment of children and those with learning disabilities. It is our own view that the potential value of interpreting such patient insight should not be discarded simply because it lacks the perceived commonality and speed of words and numbers.
  • embed patient voice in systems design – even 10 years ago, 90 per cent of US dentists had at least one computer in their practices. However, whilst dentists found that their systems were well-suited to recording digital photography and radiography, as well as admin functions such as accounting and billing, the least frequently stored information on a computer included a patient’s medical history as well as the chief dental complaint that brought them into the practice. More than 40 per cent of dentists held this relational information exclusively on paper records, in part because they felt the systems did not accommodate it easily (Source: Dentistry IQ). Now, the introduction of iPad-based apps such as C-Notes can more easily capture such data and append it to legacy systems. In the future, such apps have the potential to enable patients to add their own preferences and problems remotely, reducing the time spent in the dentist environment, and ensuring their views are recorded quickly and efficiently.

If you’re interested in how to conduct or learn from patient-centred research projects, including our Lifelines programmes, please contact us at info@customerfaithful.com

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