Project Name: Digital Solution - Penguin Patient Management System – R&I

Joint Working Project Summary:

Provide and implement a digital solution to capture research consent from patients that are suffering from long COVID.

In this project, Cievert (on behalf of Novartis), will complete the configuration of a bespoke consent templates by determining the data to be collected. Following configuration, the Penguin system will then be implemented within the Trust’s system.

Implementation of the solution in the NHS aims to;

Collect patient consent to be involved in long COVID research

BEAT Coronavirus is part of Research for the Future, an NHS-supported campaign that helps people find out about and take part in health and care research. Utilisation of Penguin will help collect participant consent to be involved in potential research.

The expected outcomes from this project (from baseline to 12 months) will be as follows:

  • Improvements in Long Covid Patient consent to research rates
  • Improvements in patient experience scores in consent to research
  • Improvement in clinician experience scores in consent to research
  • Improvement in speed of consent to research rates
  • Business Case/Project write up: including the use of software solution in the consent to research setting
  • Maintains NHS data security standards with no data breaches

Planned Milestones:

  • Project kick-off meeting
  • Preliminary Paperwork/Sign off
  • PDS IT interfacing work completed
  • Participant Mapping
  • Local Training & Configuration of Local Test Platform
  • Live System Set-up
  • Start of 12-month license, hosting and support
  • Business Case, Write-Up and Project Close

Expected Benefits

  • Improved ease in consenting to research
  • Improved speed in consenting to research
  • Improved access to consent to research
  • Improved ability and speed in recruiting patients into research
  • Flagging to clinicians patients who consent
  • Support the Trust to improve digitalisation of processes
  • Support clinicians to make a confident and informed decision about patients consent to research
  • Enabling clinicians to prioritise recruitment of patients who consent to research
  • Reputational benefit in supporting NHS and COVID recovery 
  • Increased opportunities for digital innovation and engagement across the trust
  • Improved reputation through joint working with the Trust to meet an unmet need of benefit to the patient
  • Aligns with Novartis focus of innovating to address the most significant unmet needs of patients in the UK

Start Date & Duration: February 2022, 15 months

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Project Name: Digital Solution - Penguin Patient Management System – Research and Innovation (R&I)

Partner Organisations: Northern Care Alliance Foundation Trust

Completion Date: December-2022

Outcome Summary:

Initially in this project, Evergreen Limited (previously known as Cievert; on behalf of Novartis), were to configure and implement the Penguin Patient Management System to collect participant online consent to be involved in potential research into long COVID via bespoke consent templates. The NCA process to capture consent was manual, so the aim was to digitise and drive efficiency. In addition, the project was set up to pilot Penguin within the NCA to prove it worked and could be utilised across other NCA departments.

The objectives of the project changed and Penguin was effectively utilised to help the Research for the Future (RftF) team at the Northern Care Alliance (NCA) reach out to residents of Greater Manchester via Penguin to determine if they would be interested in taking part in COVID related research.

Furthermore, the Penguin system was successfully deployed across other clinical departments within the NCA.

Outcomes:

As explained, the scope of this project changed, however useful outcomes were still achieved, as explained below.

Of the >19k eligible Evergreen App users, 3,540 unique individuals (18%) interacted with the App, viewed the banner and thus had opportunity to answer the question “Would you consider taking part in local covid research”?

A total of 321 unique individuals indicated that they are interested in learning more about covid research locally by answering ‘Yes’, which is 9% of the 3,540 Users that viewed the banner.

The NCA RftF team reported that they would expect to see a positive rate of around 5% on a similar campaign.

If the User saw the banner then there was a good prospect that they would interact with it and with a positive response.  However, 15,926 Users were sent request but never got as far as viewing the banner in the App. The challenge, therefore, to improve results for similar campaigns in the future is to better engage with those Users.

The project showed that Penguin could be used to identify and recruit study participants. Participant details were not shared with the NCA, only aggregated information detailing how many individuals would be interested in taking part in local covid research.

The project highlighted that the NCA RftF database only has access to age/gender info, the Evergreen database has more information re. medical history so the research recruitment could be more targeted via Penguin.

If this avenue was to be used in the future, the NCA RftF would need to identify trials where it could be used and ensure the appropriate ethics/compliance steps were in place to truly recruit and capture participant interest and consent.

Additionally, and further to this pilot, Penguin is being utilised within other NCA clinical departments.

Conclusion:

This project proved concept that Penguin can be set up and utilised within the NCA and Penguin has now been deployed in other NCA clinical departments to capture Patient Reported Outcome Measures

The outcomes of this project have been valuable to the NCA RftF team as it has helped them investigate alternative ways to gauge interest from public in taking park in research. It has also helped the team understand how potentially best to increase the numbers of research volunteers within their database at pace.

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