Advanced therapies education needed for patients and wider public

Scientific laboratory, looking down a microscope

A new review of research that combines patient, carer and public views of cell and gene therapies has highlighted the importance of better education and information about the treatments involved.

Advances in cell and gene therapies have the potential to transform the healthcare system. They can create novel treatments and potential cures for conditions where there are currently no or very limited treatment options.

Therapies often start with a sample of stem cells, genes and tissues from a patient. The sample is carefully delivered to a specialist laboratory where a unique ‘living drug’ is created and, in many cases, returned to the patient.

To be successfully adopted and distributed to patients across the globe, an integrated and efficient supply chain is an essential part of the manufacturing process. This is in addition to securing patient and clinical buy in.

Research

The research was published in Nature last week: Patient and public perspectives on cell and gene therapies: a systematic review. The research is funded by UK Research and Innovation (UKRI) as part of its Advanced Treatment Therapy Centres (ATTC) programme.

Authors screened more than 10,000 pieces of research in this area and evaluated the full texts of 151 publications, concluding:

  • men, and those with more severe underlying conditions, including a greater risk of death tended to be more accepting of new approaches such as stem cell research
  • while patient understanding of therapies varied considerably among patients, the provision of adequate information increased acceptance
  • patients consider their doctors or medical specialists to be the most trustworthy source of information which would suggest that patients would approach and discuss these treatments with their physicians
  • clinicians, themselves, do not always approve of cell and gene therapies and may try to discourage patients from pursuing treatment or may not have enough knowledge of the field to provide adequate advice.

New treatments and cures

Andy Jones, UKRI challenge director, said:

New cell, gene and tissue-engineered therapies can treat – and potentially cure – cancers, inherited diseases and some chronic conditions. That’s why the medicines manufacturing challenge has invested some £35 million in the NHS’ Advanced Therapies Treatment Centres.

These centres will bring together the health service, academia and industry to address the complex task of bringing life-saving treatments to patients.

But as this study shows, there is more work that we, the NHS and the wider life science industry, need to do to educate both the public and clinicians about the use of advanced therapies.

Patient and public opinion

The review was led by experts from the:

  • Centre for Patient Reported Outcome Research (CPROR) at the University of Birmingham
  • Midlands and Wales ATTC (MW-ATTC).

The review is the first of its kind and the first to consider both patient and public opinions of cell and gene therapies.

Lead author Dr Olalekan Lee Aiyegbusi, Co-Deputy Director of CPROR said:

The findings from this research are intended to inform the patient engagement work of the ATTCs. We hope that by highlighting various issues, efforts will be made to correct misconceptions, and improve the awareness of patients and the public about the potential benefits and risks associated with cell and gene therapies.

It is important that the public and patients are aware of these therapies, understand the issues involved, and can contribute to the ongoing debates.

A high level of awareness will also enhance patients’ ability to make informed decisions about participating in clinical trials and routine administration of cell and gene therapies.

Further information

About MW-ATTC

MW-ATTC is one of three, national UKRI-funded centres with a goal of accelerating the delivery of advanced therapies.

It is a regional network spanning the Midlands and Wales comprising a large consortium of industry, healthcare and university partners. Partners have expertise in advanced therapy manufacturing including:

  • academic and commercial partners
  • logistics companies
  • specialists in clinical trial delivery
  • teams focused on IT logistics solutions and health economics.

The aim of the MW-ATTC is to enable UK advanced therapy companies to reach the clinical market, while simultaneously building clinical capacity regionally to deliver these breakthrough therapies to patients.

For more information, visit the MW-ATTC website.

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