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Patient and public involvement and engagement needs to happen at all levels of healthcare decision making


Patient and public involvement and engagement needs to happen at all levels of healthcare decision making

Patient and public involvement and engagement means that “activities and research are carried out ‘with’ or ‘by’ members of the public or patients, rather than ‘to’, ‘about’ or ‘for’ them”[1]. In this case, it means that patients are involved in the development process of new therapies, medicines, and digital or technological interventions.

When done well, PPIE goes deeper than just ‘user feedback’ and provides valuable information to ensure new interventions work effectively for patients. PPIE is important because healthcare interventions that are designed with patients, will work better for patients.

PPIE is not a new concept within our healthcare system, and yet ‘excluding patients from the development and testing of new interventions is a long-standing research convention’[2]. Although there has been a major push in the private industry towards patient incorporation[3], with many pharmaceutical companies now having whole departments dedicated to patient engagement, this has yet to spread to other sectors of the health system in quite the same way.

It is not only important that new interventions are developed with the involvement of patients, but policies and clinical decision guidelines and guidance documents should also incorporate quality patient and public engagement. Potentially, the onus for patient engagement has crept too far towards the private sector and organisations operating within the NHS, such as NICE, the MHRA and others, could do more to ensure PPIE is at the heart of their decision making.

Recently, the All-Party Parliamentary Group (APPG) on Prescribed Drug Dependence called out NICE for its new guidance on the safe prescribing and withdrawal management for adults on medicines associated with dependence or withdrawal symptoms[4]. The APPG considered NICE’s new guidance on the issue to have disregarded many patient and public testimonials around the process of ‘slow tapering’ – a method of prescription removal that slowly reduces the dose of medicines associated with dependence or withdrawal over a number of months or years. ‘Slow tapering’ has been developed over many years based on the experiences of thousands of patients, but NICE cited that there was not having enough clinical evidence around its effectiveness for it to be included in the guidance[5],[6].

NICE prides itself on its patient engagement and for the most part does it well. Patients are encouraged to respond to consultations and can attend meetings where they are often given a platform to speak about their experiences. NICE’s commitment to patient, service user, carer and public involvement includes ‘[producing] clinical guidance for the NHS that focuses on the patient, service user and carer’ and ‘[producing] public health guidance that focuses on the public’s needs or the needs of specific groups or communities’.

As the APPG has flagged, in this instance, there is clearly a need for better prescription removal methods, highlighted by the patient and public involvement undertaken for this consultation.

In the prescribed drug dependence example above, the clinical evidence for ‘slow tapering’ did not meet NICE’s requirements sufficiently for it to be recommended to clinicians.  However, the extent to which the patient population advocated for its use brings into question whether the right balance between clinical evidence and patient perspective was met.  NICE has stated that it will adapt its methods to add more weight to real world and qualitative evidence in the future, which is a great step in the right direction.

Another example of a policy decision that may have benefitted from further patient and public engagement, is that of Health Secretary Matt Hancock’s announcement in 2020 that all GP appointments would become remote by default[7]. A study conducted by Healthwatch found that many people who are digitally excluded struggled with remote consultations during the pandemic and that “remote care removes obstacles for some and creates barriers for others”[8].

There was much concern around whether virtual consultations would alienate the older population. The then health secretary said it was patronising to claim that older patients could not handle technology, but research has found that only 6% of over 55s had accessed online health services amid the coronavirus pandemic[9].

The announcement from the government received criticism from the Royal College of General Practitioners, which pointed out that although the pandemic had made virtual consultations a necessity, many people benefitted from relationship-based care, and a blended approach to include all would be the best fit moving forward[10],[11].

Perhaps if more PPIE had been undertaken before the policy around ‘digital first’ was crafted, the government may have had more success – and come in for less criticism – rolling it out.

As the health system goes through unprecedented post-pandemic upheaval, structural reorganisation and extensive digital transformation, it would be wise for meaningful PPIE to happen at all levels of decision making. Numerous examples demonstrate that this is necessary to ensure that care is being driven in a direction that benefits all.






By Romney Gwynn













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