Hack the Pain
This case was submitted as part of the Call for Innovations, an annual partnership initiative between OPSI and the UAE Mohammed Bin Rashid Center for Government Innovation (MBRCGI)
The Northern Ireland (NI) Public Sector Innovation Lab has organised a hackathon, “Hack the Pain,” to address these needs of an underserved group: people with persistent pain. These individuals need for better information services for self-management, and the projects that emerged from the hackathon include a virtual reality app for mindfulness, a pain tracking app and a website of information on pain management techniques.
In 2014, a report was published by the Patient and Client Council (‘Painful Truth’) which told the stories of 2,500 people in Northern Ireland living with persistent pain. A recurring theme in these user stories was the lack of information they had to self-care and self-manage their condition. In Northern Ireland very little information is available on self-management techniques and having local information by trusted local people was cited as an important part of managing the condition.
With this in mind the Lab took the lead in the event management of a hackathon, branded #hackthepain. 45 developers, designers, service users, and service providers came to Queen’s University, Belfast on Saturday 3 June 2017 for 12 hours of information exchange, design and development of IT solutions, and judging. Judges included commercial, governmental, PHA, PCC and patient representatives and prizes were awarded for the winning solution.
Five teams pitched their digital prototypes to the judges at the end of the day. Three of the five prototypes pitched were deemed to be of real value to people with persistent pain in Northern Ireland. The winning proposition would enable people with pain to develop their own pain profile by tracking symptoms in a diary to share with healthcare professionals and contribute to data collection. A website of trusted Health and Social Care (HSC) information was also pitched and is currently in development with NI Government Digital Transformation Services (DTS). A third pitch came from a Virtual Reality (VR) team who developed a mindfulness app prototype. What was particularly innovative during this hackathon was involving service user and provider groups in all aspects of the process from early user insight workshops, one-to-one patient interviews, surveys, speed networking and involvement in the hackathon judging. All post hackathon projects have also involved development with service users. This process has ensured truly co-designed digital services.
Several digital self-management solutions were developed during the hackathon including a virtual reality app for mindfulness, a pain tracking app and a website of information on pain management techniques. Following the hack a website of information has been developed with Digital Transformation Services (Enterprise Shared Services), as part of a beta campaign on a new government communication website, MyNI. The MyNI platform gave us the opportunity to create content which was user friendly and interactive, which could be shared, liked and built upon by service users. Creating connections between users, support groups and other community & government organisations.
As this was a healthcare project it was also extremely important that all information published on the MyNI site was trusted. Working closely with physiotherapists, pain nurses, consultants and dietitians allowed us to create content which was ethically and clinically approved.
The Lab worked in partnership with over 20 internal and external stakeholders including the Patient and Client Council, Regional Pain Forum, Public Health Agency, Enterprise Shared Services and Navatalk to help create over 24 pieces of content.
Content includes hints and tips for managing pain, stories and experiences from people living with pain, information on exercise and activities and links to other resources from the NHS. The campaign has been active for 4 months with 24 pieces of content created and published. The campaign has received 18,000 unique page views with a well over industry standards click through rate of 10.2%.
What Makes Your Project Innovative?
This innovative approach was unique and different because the status quo for information sharing in Northern
Ireland Government is “NIDirect”. NIDirect, equivalent to .gov.uk, is a generic website with flat text and links. This style of website, which is extremely beneficial to sharing of Government information in a consistent way, did not meet the needs of the persistent pain user group. It is generally quite hard for people living with persistent pain to focus on flat information and during the Lab’s user insight workshops we found that this user group needed colour, videos and graphics for the information to be assimilated. During the hackathon the developers took the user perspectives into consideration with the development of the digital solutions. This confirmed the initial observation that we needed to step away from the status-quo to meet the user needs. This places a greater prioritisation of the needs of the public.
What is the current status of your innovation?
The Lab was also responsible for the evaluation of the pain management campaign. Together with NISRA we designed a survey which was posted on the website to gather quantitative information on user experience.
The survey which had 190 responses highlighted the positive impact:
· 62% of those who answered said the content was easy to read and understand.
· 65% of the survey respondents stated they trusted the content of the material.
· 57% said they were likely to share My NI posts with family and friends.
Collaborations & Partnerships
The successful hackathon would not have been possible without the partnership between the Public Health Agency (PHA), the Patient and Client Council (PCC), the Innovation Lab and Code4GoodNI. The PCC gave the Lab direct access to patient groups who allowed the Lab to document their stories and experiences. The PHA allowed us to survey a number of patients and health care professionals across the five HSC Trusts.
Users, Stakeholders & Beneficiaries
- Weekly project meetings with all stakeholders and partners.
- Qualitative interviews with service users.
- Service user vlogs.
- Surveys to service users.
- Workshops with stakeholders, partners and users.
Results, Outcomes & Impacts
On 5th July 2018 we ran a pain management evaluation event, including 12 support organisations, and 100 service users. A qualitative survey was issued during the event resulting in 50 responses:
“Good to see lots of tips here on coping with pain” and “great website” – Service user testimonials on twitter
“This is certainly a resource that I will direct patients to and will keep up to date with your posts. The videos you have on Chronic pain are ones we would often use to improve understanding of pain in our clinics.” Physiotherapist in the Belfast Trust
“This video is brilliant. I have just finished watching it and I am in tears. Very moving and clear and straight to the point. I have just had a physio appointment today and feel there is not going to be much more improvement in my pain and I am going to have to live with it which has made me feel quite angry but after watching the video I understand my condition a little more.” Service User on a recent video posted on MyNI
Challenges and Failures
The hackathon originally scheduled for the 25th March 2017, had to be postponed as we fell short of the minimum number of developers registered to make the event a success. The Lab made the difficult decision to postpone the hackathon until 3rd June 2017. From March to June, we improved our social media presence and marketing of the hackathon resulting in an increased number of registrations.
Post hackathon, the Lab found that finding digital solutions was the ‘easy’ part of the process. Development of content for the pain management website has been a challenge. Further collaboration between other bodies in Northern Ireland has needed to ensure trusted information is provided but not duplicated from other resources.
Also, we must follow the ethical approval procedures to ensure the right approach is taken for gathering patient data in the development of the pain diaries app.
Conditions for Success
- Leadership and guidance from senior levels, safe space, a mandate and permissions to try something different,
e.g. the creation of the NI Public Sector Innovation Lab enabled this to happen.
- The mandate and permissions to do things differently.
- A voluntary group, such as Code4goodni, contributing resources and a clear ‘receiving environment’ to go on to produce the innovation.
- The personal motivation and commitment of those involved to really make a difference to users, to be disruptive and not accept the status quo, to try and lead in the service design and development.
- The input of users was an essential resource.
The Lab is working on the further use of hackathons to develop digital solutions to complex ‘wicked’ challenges within the public sector. Providing a safe place for Government to test ideas and also a relatively inexpensive way of prototyping digital solutions whilst ensuring buy-in from stakeholders and citizens.
The lab acted as a catalyst, creating a safe space for a different approach, coalescing the players. The system sees and does things in a certain way and we all need a safe space or alternate routes to make something exciting happen. This project would not have been successful without the goodwill of the volunteers who helped with the organisation of the hackathon and those who are working on the implementation of solutions.