1.

Qualitative research for better decision-making

To be clear: ACT’s remit is to seek out, review and share data of outside of standard care ‘precision medicine’ treatments. However, through experience, we are mindful that these types of ‘off-label’ treatments should only really be pursued if a patient’s all-round situation has been thoroughly weighed up. Anything that seems ineffective and unsuitable is morally and medically wrong to support.

Criticism exists around treatments that are deemed outside of standard care, namely around evidence of efficacy and people being misled on the true financial and emotional cost. However, clinicians are reporting that more patients are considering these types of treatments and are unsure how to objectively support them.

ACT’s priority is to produce original research to assist patients and their families to make informed decisions when pursuing treatments outside of standard care.

Our first research focus is on capturing as much information as possible about the progress of those who have pursued innovative treatments, so that we may learn, understand and share how to improve treatments for future patients. Subsequently, further research is being developed to get a clearer idea of the economic & ‘quality of life’ cost of extending life with a hard-to-treat cancer.

Above research due to be published in late 2023.

2.

Trusted information on innovative treatment

As part of our ‘Every Chance for Everyone' charitable aim, we are motivated to create treatment navigation resources that are easily accessible to all. Our goal is to become the trusted go-to hub for expertly-sourced and doctor-reviewed information on innovative cancer treatments available, anywhere in the world.  

Our ACT Novel Treatment Info Hub fulfills this aim. The ‘ACT Info Hub’ is a searchable database of novel, repurposed and off-label treatments along with trial information to empower patients’ decision-making when standard treatment options have been exhausted. Our medical researchers/writers work to update the Hub, constantly scanning for new trials and treatments that could be adapted to target the hardest to treat tumours.

The content database information platform is free to access and offer users the:

• Ability get to grips with the latest in novel cancer treatments and trials which are not yet available as standard care.

• Search function to latest information around specific repurposed medications and other therapies that are under trial.

• Personalised tool to map out the steps, considerations and requirements if seeking treatment options, outside of standard care.

• Contact information on treatment clinics and labs.

And lots more that will be continually added.

3.

Engaging clinicians in conversations

Personalised, targeted, precision medicine is widely accepted as the future in oncology. Academic research and clinical trials into immunotherapies that harness the mechanisms of the immune system to combat tumours have recently shown promising early clinical results, while biotech companies have invested heavily in the development of clinical tools, assays and novel clinical approaches.

Despite growing interest in these novel treatments, there is often a reluctance from clinicians to discuss any non-standard options with patients for fear of their patients being misled into potentially expensive, untested treatments, which may reap little reward and, in some cases, could even be dangerous.

Through blog posts, thought-pieces, workshops, original research and future clinician symposiums, ACT’s aims are to:

• help spotlight trustworthy treatments;

• encourage honest discussion, and;

• provide practical resources and strategies for clinicians to support patients seeking immunotherapy treatments not currently approved.