Advice

The technology

The technology

The CFHealthHub (CFHH programme universities) is a multi-faceted intervention that was co-produced by people with cystic fibrosis (CF) and clinical teams in CF centres. This aimed to create a digital health learning system to change the behaviour of both people with CF and clinical teams. It is designed to support medicines adherence and uses behaviour change techniques to promote patient activation in adults with CF. The intervention also aims to improve the way that CF centres deliver care. It comprises:

  • eTrack rapid nebuliser (PARI Pharma GmBH). These are eFlow nebulisers that include a sensor that records the time, date and duration of each nebuliser use. These data are encrypted and sent by Bluetooth to the 2net Hub (Qualcomm Life). This transmits the data on to the CFHealthHub server using 2G (data transfer for mobile devices). Each CFHealthHub user has 1 eTrack nebuliser. This is used to give all of their nebulised CF treatments.

  • The online CFHealthHub server, a secure cloud-hosted server that is managed by Manchester University.

  • CFHealthHub online portal and app. This can be accessed by clinicians and patients using computers, tablets, or smartphones. It presents real-time data from the eTrack nebulisers. This allows daily and weekly adherence to nebulised CF medicine to be viewed by patients and their clinical team. Users can add their body weight and home-spirometry measurements to CFHealthHub, and these can also be viewed by their clinical teams. Spirometers with open application programming interfaces (APIs) are being added to the CFHealthHub system to allow remote lung function monitoring with automated data upload. The app also has educational content and evidence-based behaviour change tools to support people with CF to develop self-care habits.

  • CFHealthHub is part of a digital learning health system that continually captures data to inform clinical teams about the quality of CF care they provide. This data is reviewed at weekly meetings of clinical teams in 16 CF centres who analyse how CFHealthHub is used within those teams and to improve the way that they deliver care. This enables a community of practices in the 16 CF centres to support continual improvement of both care delivery and of the CFHealthHub platform itself.

CFHealthHub can also be used with I‑neb nebulisers (Philips). Data are not automatically transferred from the I‑neb but instead can be manually downloaded at clinic visits. However, future developments to I‑neb may allow automatic data transfer. Data from the I‑neb and eTrack nebulisers are displayed to clinical teams in the same format. People using the eTrack nebuliser can switch off data transfer if they do not want data to be shared with their clinical teams.

The platform has 3 main purposes. Firstly, to support behavioural change that will improve adherence to their recommended medicines and promote patient activation. Secondly, to help clinicians to support people with CF to build good self-care habits, by giving them accurate data on how well they follow their schedule of prescribed medicine. Thirdly, to allow CF centres to track use of medicines, and seek support if medicines adherence rates are lower than average for their centre.

Since the start of the COVID‑19 pandemic, a digital consent system has been developed to allow people with CF to be given access to CFHealthHub remotely, while shielding from COVID‑19. Modifications have been also been made to allow virtual clinics to take place. The portal is being regularly adapted by centres using the platform to support people with CF and clinical teams during COVID-19.

Innovations

CFHealthHub enables remote monitoring and virtual clinics for people with CF. This is critical for CF monitoring during the COVID‑19 pandemic because people with CF are classed as extremely vulnerable and are advised to avoid any risk of exposure to COVID‑19.

The CFHealthHub platform includes educational and behaviour change material to promote patient activation and help improve people's self-care. This material has been co-produced by people with CF and their clinical teams. It is designed specifically for CFHealthHub using evidence-based behaviour change techniques.

Of the 24 adult CF centres in England, 16 are already offering CFHealthHub. There are 2 further centres in the process of joining the service.

Current care pathway

People with CF are described by the UK government as being clinically extremely vulnerable to COVID‑19. Initially, people who are clinically extremely vulnerable were strongly advised to stay at home as much as possible. Advice was to keep visits outside to a minimum and maintain strict social distancing.

People with CF should minimise face-to-face contact to reduce the risk of infection. For people who still need to attend face-to-face appointments, existing arrangements to prevent cross-infection should include measures relating to COVID‑19. Many CF services have provided home-spirometry equipment to patients for home-monitoring during the COVID‑19 pandemic, and have arranged home collection of airway culture samples while people with CF are shielding.

Adults with CF should be in the care of a multidisciplinary team and have comprehensive annual reviews as well as regular reviews every 3 to 6 months.

Some treatments for CF involve a nebuliser to convert liquid medicine to an aerosol, which is inhaled. People with CF should be offered a mucoactive agent, with rhDNase (dornase alfa; recombinant human deoxyribonuclease) as the first choice of mucoactive agent. rhDNase is taken using a nebuliser, usually once per day. Antibiotics such as flucloxacillin, which is given orally or intravenously, or colistin, aminoglycosides or aztreonam, which are nebulised and inhaled, can be given to treat infections. CFHealthHub does not currently monitor the use of oral therapies.

The following publications have been identified as relevant to this care pathway:

Population, setting and intended user

CFHealthHub is intended for adults with CF and CF teams in the NHS. This could include respiratory medicine and CF consultants, CF specialist nurses, physiotherapists and dietitians. The CFHealthHub developers are working on modifications to the platform for people aged 13 and over to use it. This work is expected to finish in 2021.

Clinical teams are given training to use CFHealthHub, which is free of charge. Training is given using an online programme that involves 4 sessions lasting 2 hours each. These sessions include advanced behaviour change techniques for the relevant leads in each centre. There are weekly meetings between all CF centres using CFHealthHub, and these include training issues. One-to-one mentoring is available for people experiencing complex issues and for people who want more training. Training is led by a professor of behaviour change and a specialised CF physiotherapist.

Costs

Technology costs

  • eTrack rapid nebulisers are purchased by the CF service from PARI, at a negotiated cost of £1,600 per unit. This includes 12 months of data transfer costs and consumables. Each patient uses a single nebuliser unit for all their nebulised medicines, with interchangeable nebuliser heads that are specific for each medicine used. Each nebuliser unit is expected to last 5 years.

  • Data transfer charge paid by each CF service to PARI is £191 per patient every year, from year 2.

  • Access to CFHealthHub is a not-for-profit online platform that is currently free of charge. From April 2021, costs will be charged to services to cover running costs. This is estimated to be around £300 per patient every year, although costs will fall as more people start using the platform.

Costs of standard care

The resource impact would be in addition to standard care. Standard care involves using nebulisers to give mucoactive agents, as well as advanced molecular therapies. The standard care tariff for CF varies depending on the severity of the person's illness. The 2018/19 reference costs range from £4,288 to £52,855 per year (excluding CF transmembrane conductance regulator [CFTR] modulator therapies and nebulisers). Currently, eTRack and eFlow nebulisers are excluded from the tariff and are purchased by CF centres or by people with CF. I‑neb nebulisers are provided free of charge to CF centres, and are paid for by NHS England.

Resource consequences

The charging structure means that the cost of CFHealthHub differs between the first year, which includes the capital costs for the eTrack nebulisers, and is lower in later years. From April 2021, the costs of running the platform will be added.

To use CFHealthHub each user needs an eTrack rapid nebuliser, at a one-off charge of £1,600 per unit. There is also a yearly data transfer fee to PARI which is £191 per year from year 2. CFHealthHub is currently free of charge but is expected to increase to £300 per year from April 2021. This results in ongoing costs of £0 per year in year 1 (£300 per year from April 2021) and £191 per year from year 2 onwards (£491 from April 2022). There will also be some resource costs in medical time taken to examine data on CFHealthHub.

The cost of current care includes a nebuliser, medicines and staff costs for regular consultations to monitor care. For adults, these are recommended every 3 to 6 months. The level of contact will be affected by the severity of the person's condition and involve multidisciplinary teams. The COVID‑19 pandemic has prevented many regular reviews from taking place.

CFHealthHub could be cost saving if it reduces the time it takes for medical staff to monitor people with CF. There could also be cost savings from improvements in medicines adherence, both in improved outcomes (resulting in fewer hospital admissions and reduced use of rescue therapies) and reduced medicine waste. The intervention developer has estimated that CFHealthHub could lead to additional savings of around £1,300 per patient every year because of reducing medicine waste.

A preliminary economic analysis by Tappenden et al. (2017) included an economic model that used assumptions on the effectiveness of CFHealthHub. The analysis was done from an NHS perspective. It found that CFHealthHub was dominant, meaning it was both cost saving (£64,078 per patient) and improved quality-adjusted life years (by 0.19) over an average treatment lifetime. The costs savings resulted from improvements in medicines adherence and preventing CF symptoms from worsening. This led to reduced hospitalisations and rescue interventions.