People affected by pancreatic cancer will be able to track symptoms, log appointments, and share their health data with clinicans through a new, free app launched by the charity, Pancreatic Cancer UK, in conjunction with Medli Health.
Available to download, the new app, Medli, will give pancreatic cancer patients the power to better understand the disease, their symptoms and what the next stages of their care plan should look like, while collecting much-needed data to potentially help research breakthroughs and transform the future for patients.
Improving survival rates
Around 10,500 people are diagnosed with pancreatic cancer every year in the UK, and more than half will die within three months of diagnosis – making it the deadliest common cancer.
And unwarranted variation in treatment and care worsens outcomes for patients across the UK.
However, gathering insights specific to pancreatic cancer to address these variations has been historically difficult as, up until 2021, the data was anecdotal or amalgamated with other cancers like upper gastrointestinal, which dilutes the information.
Evidence gained from research projects can plug this data gap and be transformative to cancer care. However, research opportunities are not being highlighted to relevant pancreatic cancer patients.
Raising awareness
The 2021 National Cancer Patient Experience Survey found that 39% of people with pancreatic cancer would have liked to have taken part in cancer research, but were not aware of the projects available to them.
Medli will help Pancreatic Cancer UK accelerate research breakthroughs by providing improved access to clinical and treatment data, as well as data on quality of life and service provision, which would identify unmet needs and new areas for services development.
The app will also give access to Patient Reported Outcome Measures, which captures patient perception of their own health through questionnaires; and Patient Reported Experience Measures data, which measures a patient’s personal experience of the healthcare they receive.
Experience in other cancer types demonstrates that the more robust the data, the more significant the improvements that can be made to patient care.
New, richer, national, and regional data on quality of life, treatment, and care pathways will enable the charity to create compelling, evidence-based policy recommendations.
And this will ensure the best treatment and care is received by patients everywhere, no matter their location in the UK.
Sharing data
App users have full control over whether they share their health data with healthcare professionals, which could lead to more-informed conversations about their treatment.
Friends and family can also be given access to input information on a patient’s behalf, which can help them to support their loved one to manage their medication and keep track of appointments.
Medli’s Navigator function would have given me back two or three precious days with my dad and this would have been a godsend. It would have taken away so much stress and anxiety during such a horrendous time to not have to rattle my brain and think of questions I should be asking
If they choose to share their health data with people in their life, they can do this within the app by entering the details of the individual they want to share their data with.
Keeping track of medication is also a known challenge for pancreatic cancer patients.
Pancreatic Enzyme Replacement Therapy (PERT) is just one medication they need to digest their food properly and often they need to take multiple tablets with everything they eat.
Medli will help improve the quality of life of patients by providing a place where they can record all their medication and appointments, track their symptoms, and the severity, resulting in more-informed conversations with their healthcare team, as well as providing guidance on what they should be expecting next on their treatment journey.
James Farrell and his sister, Katie, lost their father, Peter, less than a month after his diagnosis
Changing the future
James Farrell’s father, Peter, had a bad back for several months in 2013, but assumed it was nothing serious.
But, after reading an article about pancreatic cancer, he called his GP who referred him for tests.
Initially he was diagnosed with a hiatus hernia, but a week later, Peter showed symptoms of jaundice and was diagnosed with pancreatic cancer in December 2013. He died less than a month later, never making it to 2014.
Since losing his dad, James has been determined to change the future for pancreatic cancer patients and helped to test Medli prior to launch.
“My dad suffered with mild back pain and slight weight loss for almost a year,” he explains.
“Not thinking either serious enough to worry a doctor about, his pancreatic cancer was left undiagnosed.
“If we had known the symptoms then, he may well still be with us today.”
Reducing confusion
He adds: “We spent several days researching everything we needed to know about pancreatic cancer after my dad was diagnosed.
“Medli’s Navigator function would have given me back two or three precious days with my dad and this would have been a godsend. It would have taken away so much stress and anxiety during such a horrendous time to not have to rattle my brain and think of questions I should be asking.”
Pancreatic cancer patients will finally have a tool in the palm of their hand that will assist in managing their condition and give them the knowledge to best navigate the healthcare system
The navigator function on Medli will provide tailored information to patients about the next steps of their own journey following diagnosis to ease their minds and take away any confusion about what to expect.
This will alleviate unnecessary stress and give the patient the power to ask the right questions and understand more about what should be happening, and when.
To facilitate the launch of Medli, the charity partnered with The Brain Tumour Charity following its own successful venture into app development for brain tumour patients.
In December 2020, The Brain Tumour Charity launched BRIAN, an initiative to gather and improve access to data on brain cancers.
After successfully helping patients, as well as providing data to help form care and support decisions, they decided to develop Medli Health.
Time for change
Pancreatic Cancer UK was chosen by The Brain Tumour Charity to be launch partners for Medli after it demonstrated the huge data gap evident in pancreatic cancer.
Sarah Bell, head of services at Pancreatic Cancer UK, said: “Pancreatic cancer patients will finally have a tool in the palm of their hand that will assist in managing their condition and give them the knowledge to best navigate the healthcare system.
“For too long pancreatic cancer patients have been left to manage a scary and overwhelming journey, which can be confusing if they have been provided with little or no guidance.
“It’s time to change, both for people living with the disease right now and in the future.
“Medli will give those who have been diagnosed the chance to contribute to research specific to pancreatic cancer without having to jump through hoops or commit time to projects, which would take it away from their loved ones.
“This patient-reported data could be invaluable in monitoring standards of care across the country and providing health professionals and the NHS with quality data to improve services and deliver the best outcomes for patients.”
Graham Norton, interim chief executive of The Brain Tumour Charity, adds: “We have seen first-hand how data we’ve collected through BRIAN can have a positive impact.
“It is invaluable in understanding people’s quality of life and helps to drive forward research and we hope Medli will remedy the glaring data gap for pancreatic cancer, improving outcomes in the future, while providing a hub of comfort for patients today.”
