Cystic fibrosis funding

Funding opportunity to make life easier for those living with cystic fibrosis

The Monash Institute of Medical Engineering (MIME) is working with the 65km for Cystic Fibrosis community and Monash Partners Academic Health Science Centre in an effort to help make life easier for those living with cystic fibrosis.

Applications have now closed for initial seed funding of projects for new technologies in engineering, software and computer applications to provide possible solutions to identified themes.

After consultation with those living with cystic fibrosis and clinicians working in this space, examples of current needs within the cystic fibrosis community include:

  • A user-friendly and smart Positive Expiratory Pressure (PEP) device
  • Medication administration management
  • A unified appointment management platform, and
  • A real-time quality improvement platform for CF services

For more on these please see the Themes section below.

Please note this funding opportunity is about creating something that would make life with cystic fibrosis a little easier to manage in the real world.

Cystic fibrosis

This is a great opportunity to be part of developing new and meaningful solutions to the real-world problems of people living with cystic fibrosis.

Themes

After consultation with those living with cystic fibrosis and clinicians working in this space, the following provides examples of current needs within the cystic fibrosis community. The general principles applicable to the themes include:

  • The proposed solution to the theme and clinical problem needs to be implementable within the intended community and across multiple services.
  • The system or device should be ‘future-proofed’, so it doesn’t become redundant in the near future.
  • The solution should not duplicate existing technology.

To hear further on these needs, a discussion was recently held where representatives from the cystic fibrosis community along with clinicians affiliated with MIME and Monash Partners Academic Health Science Centre elaborated on the themes identified. This discussion gave engineering, IT and design researchers the opportunity to consider these identified needs and propose MedTech based solutions. Missed the discussion? Access the recording HERE.

Theme

2021CF-01 User-friendly and smart Positive Expiratory Pressure (PEP) device

Clinical problem

Cystic fibrosis (CF) interrupts the function of a single protein and results in sticky mucous build up within the lungs. The presence of this sticky mucous in the airways can prevent the clearance of pathogens from the lungs and result in obstruction and infection. By creating airway resistance, positive expiratory pressure training aids encourage forceful expression of mucous. The positive expiratory pressure technique needs to be repeated a number of times every day. PEP sessions require the patient to reach a target pressure with each exhalation to be effective. The process can become boring and tiring, especially for children, and motivation to undertake it can be low, even though it is essential and well known to prevent infection.

Consumer driven considerations

Ideally, the solution would be a PEP unit that:

  • Counts the number of times the target expiratory pressure is reached.
  • Motivates the user to continue.
  • Provides feedback on consistency of breaths, pressures achieved and pattern of breathing.
  • Motivates children by, for example, showing an image of what is happening in their lung when the blow out, such as blowing up a balloon.

Existing work

Current work: UK Project FIZZYO – a wireless pressure sensor that fits into the PEP equipment and measures airway clearance techniques, attaches to an activity tracker device and includes gaming features. It also measures the effect of feedback and a gaming app in intermittent time periods.

A clinical study has been designed and is underway to examine the effects of Fizzyo in children with CF (here).

Theme

2021CF-02 Medication administration management

Clinical problem

CF mainly affects the lungs, but also impacts the digestive system, including the pancreasliver, intestines, and kidneys. CF may also impact the ears, nose and sinuses, sex organs, and the bones and joints. Because CF attacks so many organs in the body and causes persistent lung infections, several medications are usually needed to manage the disease.

Consumer driven considerations

  • PERX Health focuses on adherence to medications. What is needed is a digital technology solution (e.g., a smart phone App to manage scripts without gamification – the ideal solution needs to be focused around an easy to use administrative tool, since not all people (e.g. adults, family members) want games.
  • Also needed is an automated/semi-automated system that sends direct messages to doctors requesting script repeats, a prompt to trigger GP appointments based on set criteria (e.g. a 6-repeat script).
  • The App should link to a pharmacy to streamline the process of filling the script.

Existing work

Current work: Perx Health is a mobile health App that uses gamification (point earning and minigames), dosage reminders (visual adherence feedback), incentives (lottery style delivery of gift cards), education (on the disease) and social (chat forum) components.

Cystic Fibrosis Australia (CFA) has partnered with Perx Health to help CFA members manage treatment plans and is offered free to CFA members.

Theme

2021CF-03 Unified appointment management platform

Clinical problem

A patient may briefly leave a scheduled appointment to go about their day (a regular occurrence due to the significant number of medical appointments required) and lose their appointment.

Consumer driven considerations

  • Create a virtual room that indicates when the health service provider is coming, particularly upon admission and then ongoing.
  • Needs to be for both inpatient and at-home care.
  • Able to set alerts in one setting to advise if health practitioners are delayed, absent and/or on their way.
  • Provide an opportunity for virtual ward rounds, particularly if team members are required to provide care for COVID patients.
  • Also required for hospital in the Home (HITH) appointments and allows a coordinated approach between home care and hospital/pathology testing.
  • Needs to be easy for hospital staff to use as it would need to be regularly updated.
  • Should have capacity to include appointments for various types of appointments (e.g., radiology, pathology etc).

Existing work

Current work: An example portal exists for the Royal Children’s Hospital.

Theme

2021CF-04 Real-time quality improvement platform for CF services

Clinical problem

Current systems available to provide feedback on clinical experience in response to CF services are complaint orientated.

Any action that may result is delayed for months to years. Most actioned follow up is an apology as it is related to a complaint, which is limited in effectiveness for quality improvement.

Consumer driven considerations

  • Real time opportunity to provide input in the moment, e.g. when there is a safety risk .
  • It should be available for inpatient and outpatient services.
  • Information needs to be able to be provided confidentially.
  • The system needs to allow input of enough information in an appropriate format to enable a ‘hot spot’ to be identified, to enable data analysis for the purposes of research and implementation of change.

Existing work

N/A

What is cystic fibrosis?

  • Cystic fibrosis is a progressive genetic disorder that mainly affects the respiratory (lungs), digestive (pancreas), and reproductive system (male infertility).
  • Characterised by thick, sticky secretions to clog the lungs and other organs.
  • Typical symptoms include abdominal bloating, loose stools, and poor weight gain as well as coughing, wheezing, and frequent respiratory tract infections throughout life.
  • The diagnosis is based on sweat test results and/or genetic testing.
  • Treatments include antibiotics, bronchodilators, drugs to thin lung secretions, airway clearance treatments for respiratory problems, supplements of pancreatic enzymes and vitamins for digestive problems, and drugs to improve the function of the cystic fibrosis protein in people with certain mutations.
  • Some people benefit from liver and lung transplantation.

For further information about this funding opportunity to make life easier for those living with cystic fibrosis contact Andrew Carey, MIME Program Manager on andrew.carey@monash.edu