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NHS Launching Patient Registry To Support Evidence Base For Cannabis Medicines

THE NHS is to launch is first-ever cannabis patient registry in a move which signifies an ambition for the medicines to become more widely-available to UK patients.

Health Secretary Matt Hancock ordered an urgent review into the lack of cannabis prescriptions, last spring.

The creation of a patient database was one of the recommendations of the subsequent report; ‘Barriers to accessing cannabis-based products for medicinal use on NHS prescription’

The NHS has now confirmed to BusinessCann that this will now be launched early next year entitled the Patient Registry for Cannabis-Based Products.

Prof Mike Barnes, Chair of The Medicinal Cannabis Clinicians’ Society.

No Data; No Action

This announcement has been welcomed, as a lack of data on the efficacy of medical cannabis has been one reason highlighted for a woeful lack of prescriptions through the NHS.

However, unless the database is also opened up the the private sector then it may well fail to achieve its desired goals, says one of the country’s leading cannabis doctors

Muhammed Vohra, Principal Business Analyst at Arden & GEM, and project lead on the patient registry for the NHS, said: “By enabling the standardised collection of data for all patients being prescribed cannabis-based products, to treat certain medical conditions, our aim is to improve patient care through robust monitoring and evaluation.

“For users, the registry supports clinical decisions to be taken, based on the latest guidance, so that we can keep patients safe while gaining better clinical evidence about the potential impact of these fairly recently rescheduled products.”

As things stand in the UK, there are three licensed cannabis medicines; Sativex, Epidyolex and Nabilone with around 100 patients said to be receiving monthly prescriptions. 

However, most cannabis patients and their clinicians prefer the unlicensed medicines which allow for a greater diversity in prescription based on relevant THC and CBD ratios.

Just three patients on the NHS are currently allowed access to the these and, as a result, some fear the registry will therefore be unable to gather the required data.

There are believed to be up to 2,000 patients in the UK currently accessing ‘full spectrum’ medicines through the growing band of private UK clinics.

Is It A waste Of Time?

This was a point taken up by one of the country’s leading medical cannabis clinicians Prof Mike Barnes, Chair of the UK Medical Cannabis Clinicians Society.

He told BusinessCann: “I welcome the idea and and hope it will be used positively to support greater NHS prescriptions, as soon as possible. 

Gavin Sathianathan, founder of Alta Flora.

“However the flaw in an NHS-only registry is that it will tell us nothing on the use of full spectrum products as there are not any NHS prescriptions, except for the three children. In other words it may well be a waste of time, unless the private sector contributes.”

This point was taken up by Mary Biles O’Mahony, Medical Cannabis Journalist and Educator, who said: “It’s great news to see the patient registry for Cannabis-based products for medicinal use (CBPM) launching in the new year. 

“Hopefully the data recorded will inspire confidence in specialist doctors within the NHS who until now have been reticent about prescribing cannabis-based medicines citing a lack of evidence and a concern about side effects. 

“However, because prescriptions within the NHS have largely been for licensed cannabis-based medicines such as Sativex or Epidyolex, the registry will hold very little information about unlicensed CBPMs which are, on the whole, only prescribed in private clinics; potentially further cementing the great divide between CBPM prescription within the NHS and the private sector.”   

Mitigating Cultural Baggage

Gavin Sathianathan is founder of Alta Flora, the creators of Eva, a patient data app that records the effectiveness of cannabis medicines for patients through the Project Twenty21 initiative.

He said: “The registry provides the opportunity for patients to share their experiences with medical cannabis and help to develop the evidence base that will shape how medical cannabis is regulated, prescribed and administered in the future. Having a data-driven conversation about medical cannabis can go some way in mitigating its cultural and political baggage.”

The NHS Arden & GEM Commissioning Support Unit says the registry will be a web-based application, developed with input from specialist prescribers, clinicians, the National Institute for Health and Care Excellence (NICE) and the Medicines and Health products Regulatory Agency (MHRA). 

In a statement to BusinessCann it went on to say: “It enables prescribers to record information about patients, episodes of care, review requirements and response to medication including patient reported experience and outcomes.

“Any side effects or reactions to cannabis-based products for medicinal use will automatically populate the MHRA ‘yellow card scheme’ which collects information on medicines and medical devices to identify safety concerns.

“The data is held in a secure cloud-based environment, with bespoke data-flows available to service reporting and dashboard needs related to evaluating clinical effectiveness, developing commissioning policy and monitoring outcomes.”

Private sector cannabis patient registers are already collating data in the UK. These include Project Twenty21 and the Sapphire Medical Cannabis Registry.

One further recommendation of the  ‘Barriers to accessing cannabis-based products for medicinal use on NHS prescription’ was the launch of a series of Randomised Control Trials into epilepsy. This has yet to progress with patient groups objecting to the trial design.

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