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Bringing the patient voice to the table: a true impact or a ticked box?

Medical Technology Group responds to new NICE guidelines on shared decision making

For years, clinicians have been encouraged to ask, listen, and act in response to patients’ views, begging the question, “why are patients still not being listened to?”

This has been brought to the fore by the Covid-19 pandemic, which has seen the patient voice sometimes getting lost in the fast-paced fog of change.

Now, this June, NICE has published new guidelines for engaging patients in the decision-making process.

Broken down across different levels, it sets out key recommendations to embed a systemic culture of shared decision making.

  • At an organisational level, NICE recommends that a patient director is appointed to ensure the voice of patients is heard among senior leaders. (1.1.2)
  • This should be supported by ongoing training for healthcare staff across the organisation so they have the knowledge, skills and confidence to support shared decision making. (1.1.12)
  • In practice, honest and structured conversations with the patient, along with informational resources is recommended before, during, and after appointments, to ensure patients are fully involved throughout their care. (1.2)

This is good news for patients, but there is still a way to go before we see this culture become reality, with patient involvement still often treated as a “nice to have”.

Ticking the box: from the horse’s mouth

This culture was a recurrent theme in our recent survey of patient group members.

Conducted in the Spring, we asked our patient groups where they think the patient voice is being heard effectively within decision making structures and where improvements are needed.

They told us that, although the patient voice is routinely sought, it lacks weight and value, with little evidence that it has an impact on the final decisions that are made.

This is matched by a lack of transparency on how patient involvement has influenced a decision, leading to the general sentiment that it is little more than a tick-box exercise.

Many also noted the poor communication between healthcare systems and patients as a key issue, often leaving patients unaware of the opportunity to contribute to the NHS. Many also believed that they do not have the requisite knowledge or qualifications to become a patient advocate.

An opportunity for change:

The Covid-19 pandemic has ignited a culture of change and improvement across the healthcare system which we hope to see remain ablaze following the crisis, representing an opportunity to put patients at the centre of their care, now and in the future.

The Medical Technology Group has always recognised the importance of the patient voice, with a clear role for patients in decision making a key recommendation in our recent Medical Technology Access Accelerator report.

We now recommend that the new NICE guidelines are treated as a model to be applied throughout organisations to instil a universal culture of shared decision making.

Patients are experts in the lived experience, and key players in ensuring treatments respond to their needs and reflect their preferences.

It is time to put them at the heart of decision making.

July 2021

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