Remote monitoring in rheumatology

At the beginning of my fellowship...

As I began my Topol Fellowship in September 2019, the reality for many rheumatology services was an outdated and unsustainable operating model, with clinics overbooked due to unpredictable demand from patients in disease flare as well as those in remission, potentially attending unnecessary appointments. Enter remote monitoring, the process of using technology to monitor patients outside of a traditional care setting, such as in their own home.

The aim for my project work was to build upon an earlier ‘proof of concept’ remote monitoring service pilot at Guy’s & St Thomas’ NHS Foundation Trust (GSTT) and expand the digital service to support rheumatoid arthritis (RA) patients to track disease progress between hospital visits, whilst alerting clinicians to any deterioration in their condition through the user-centred design and development of a 2-way short messaging service (SMS).

The proposition was based on discovery work undertaken prior to my fellowship to explore better ways to help identify patients who could benefit from greater flexibility through remote care and who continue to live well, by avoiding the reminder of disease through attending unnecessary hospital appointments. I had begun to frame the significance of regular remote capture of patient-reported outcome measure data (PROMs) between appointments to support shared decision-making about when patients needed care the most.

The assumptions I intended to test were:

  1. By offering a flexible means of communication for patients there will be a positive impact on care.
  2. By framing the importance of PROMs in rheumatology care, patients will want to use the service.

The broader objectives I set for my Topol fellowship were:

  1. To apply the culture, processes, business models and technologies of the internet era to respond to patients’ raised expectations of care for long-term conditions.
  2. To develop an understanding of a combination of design thinking, lean and agile methodologies and apply these to my digital health project.
  3. To address the clinical, practical and emotional aspects of service delivery to design a consistent, usable service which puts patients at the heart of the design process.
  4. To accept failure (quickly), learn from the experience and take this learning with me through the project.
  5. To embed the aspirations of the NHS Long Term Plan into value-based care and service design in rheumatology.
  6. To empower patients to take greater charge of their care using digital tools.
  7. To explore alternative non face-to-face care pathways which utilise intelligent remote monitoring tools.
  8. To deliver healthcare on a far more rational, efficient and tailored basis.

My personal objective was to take every opportunity throughout the duration of the fellowship to support my growth and development as a digital leader through attendance at webinars, seminars, digital events, conferences, workshops and to develop my own dynamic network within the digital community to support an asset-based culture of sharing work and supporting the work of others.

In this video Melanie Martin discusses her experience from her time as a Topol Fellow during which she focussed on remote monitoring in rheumatology.

During my fellowship...

During my time as a Topol Fellow I have benefitted greatly from the ‘gift of time’ to not only explore the potential of the work I brought into the programme but also the wider impact I have as an emerging digital leader in the NHS. I have chosen to describe my experience of the fellowship in three ways:

  1. Impact of my project work
  2. Impact as a Digital Leader
  3. Personal reflections as a Topol Fellow

1. Impact of my project work – Remote Monitoring

I could not have predicted the growth of interest in remote monitoring when beginning the fellowship, accelerated by the COVID-19 pandemic and the rapid need to restrict access to routine outpatient care to essential face-to-face care only, due to risk of transmission. Prior to COVID-19, I had brought to the fellowship a relatively mature project concept to support rheumatology patients with long-term disease through a 2-way SMS communication channel, exchanging patient-reported data between hospital visits to develop a more flexible and responsive service which could potentially support patient-initiated care and shared decision-making about what a patient’s needs are. The minimally viable product (MVP) remote monitoring service had already been through a discovery phase to be certain the problem we were trying to solve was worth solving for many.

The solution has been to design, test and implement a 2-way SMS remote monitoring service for RA patients which captures monthly PROMs whilst allowing for unsolicited contact from patients between clinic visits. As the Clinical Product Owner (CPO) I have led a multi-functional agile team through alpha, beta to a simple and usable service which patients have engaged with.

Then along came COVID-19 and the potential of remote monitoring to keep well patients out of hospital gave greater impetus for the need to scale the MVP service model to other rheumatology services across the Integrated Care System (ICS) of South East London. Prior to COVID-19, rheumatology services across the ICS recognised the common problems facing services. The key to unlocking a cross-boundary solution has been to come together to design and implement a unified remote monitoring digital pathway during the pandemic, supported by a novel role, the Digital Pathway Co-ordinator, and building upon the MVP service model at GSTT.

Partnering with three NHS trusts across six hospital sites offered both a significant challenge in terms of governance, safety, risk management, communication, digital maturity and cultural alignment. It also represented a great opportunity to test the scalability and sustainability of a digital service which is dependent on the cultural and behavioural change of two user groups.

There has been tremendous engagement from all stakeholders across the ICS with clinical teams from five sites now offering the service with uptake and engagement from patients, supported by an engaging onboarding film with convincing peer-to-peer testimonials from current users of the service. Whilst the future needs of users is ever more uncertain in the COVID-19 pandemic, I anticipate an unprecedented demand to support patients with long-term conditions remotely to support care out of hospital in the future. I feel a strong sense of responsibility to share the quick wins from our remote monitoring NHS service model to act fast to meet the current challenges facing the NHS.

2. Impact as a Digital Leader – from Clinical Product Owner to Clinical Advisor at NHSX

During the first wave of the COVID-19 pandemic I was invited to be seconded to NHSX to join the COVID-19 Clinical Cell work, led by National Clinical Director, Gareth Thomas. I jumped at this opportunity as the Topol programme was paused. I committed to working three days a week for nearly five months at NHSX (entirely remotely) as well as working in a busy rheumatology service. During this time I was involved in a number of digital health projects and was able to demonstrate digital leadership across each of the following:

  1. Contact Tracing App – I facilitated regular clinical engagement with Senior Clinical Leaders in the Isle of Wight Contact Tracing Pilot phase of the proposed national roll-out of contact tracing. This involved developing personas of typical healthcare workers likely to interact with the contact tracing app, testing the validity of these, gathering and acting upon user feedback from frontline clinicians and ensuring this reached the product development team.
  2. Product reviews – reviewing as a ‘critical friend’ the high volume of pro bono digital solution offers coming into NHSX to support the NHS response to the pandemic.
  3. Digital Playbooks – I co-ordinated, facilitated and helped maintain a frontline community of stakeholders through engaging with networks – including frontline clinicians, National Clinical Directors, the Third Sector and Arma Length Body representatives to support the co-production – through ideation, designing, protoyping and testing – leading to the creation of a series of Digital Playbooks in Musculoskeletal Health, Cardiology, Dermatology, Respiratory, Eye Care. See:
  4. NHSX blog post – Whilst at NHSX I was able to share my experience of being a Topol Fellow and my work focussed on remote monitoring. I was invited by Tara Donnelly, Chief Digital Officer, to write a blog post for NHSX about the role of remote monitoring in the future of the NHS. My Topol project work was shared at an NHSX Show & Tell with CEO, Mathew Gould, sharing the patient experience film to over 100+ NHSX employees. See:
  5. Clinical Advisory Network member – I was also able to contribute to the formation and shaping of a Clinical Advisory Network, which began initially as a small group of <10 clinicians within NHSX to a dynamic and ever-growing community of >45 members with alumni membership and external contributors from NHSE/I, NHS Digital amongst others.
  6. Sharing experience as a digital clinician – I was invited by Tara Donnelly to deliver a ‘frontline Models of Care: Past, Present and the Future’ workshop for the Innovation Team as a personal reflection on my experience as a digital clinician in the NHS. This was really well received, delivered again to a wider team and recorded as a useful resource to new team members for insight gathering.

3. Personal Reflections as a Topol Fellow

The expression of being on a ‘journey’ is used all too frequently for those describing transformation in their lives. I prefer to describe a personal ‘metamorphosis’ from a digital clinician to digital leader through my fellowship. I have been able to progress my career which now means I will be joining NHSX full-time from March 2021 to continue to support the digital transformation of the NHS and contribute to the recovery mission from the COVID-19 pandemic and work together towards the ambitions of the Long-Term Plan.

During the Topol Fellowship I have also been involved in a number of other digital health initiatives, projects and work-streams including:

  1. Physiotherapy Digital Self-referral – I have led the design, development and scaling of a digital physiotherapy self-referral service for back and knee pain across four Primary Care Networks in Lambeth. Whilst the service launched in 2019, uptake of self-referral was low. In January 2020, whilst a Topol Fellow, I was successful in achieving a grant to produce a series of patient-facing videos to promote self-referral and self-management of some of the most common musculoskeletal conditions including back and knee pain. Two of three films have now been produced ( the third has been delaYed due to Covid-19): Physiotherapy self-referral and Be active with back pain.
  2. NHS Change Challenge – NHS England and Improvement invited health professionals to share the innovative ways they have been working during the COVID-19 pandemic, so that they can explore which of the positive and beneficial changes should continue. I had two contributions successfully published:
    Improving telecommunication channels for rheumatology patients to improve access to information and people during a pandemic and Remote monitoring service in Rheumatology.
  3. Getting it Right First Time (GIRFT) Rheumatology Report – The rheumatology remote monitoring service, the output of my Topol fellowship, has been identified by the GIRFT Rheumatology committee as an exemplar and a case study outlining the design and delivery of this service has been submitted to the final report committee for publication in 2021.

Lessons learned:

Top 5 lessons learned (in no particular order):

  1. Prioritisation – it is important to prioritise your efforts and resources using your Topol time to focus on the problem you are trying to solve, what really matters to you or what you feel offers the greatest value to the individual, provider or wider system. I received the advice -‘you cannot be all things to all people’. This is important to remember as your mentors’ priorities (visible or hidden) for the work may not be your own and it is important to focus on the problem you set out to address. Staying ‘true’ to your vision for the work, the objectives initially set and to the evaluation questions planned will help with prioritisation because as a subject matter expert, you will know what the greatest opportunities are within the sphere of your work to make an impact.
  2. Build your network – I have benefitted hugely from the support, knowledge, learning and opportunities which have come from building a network. A network becomes unique to you. Networking has provided me with the opportunities to meet others that I can work together with to strengthen the asset-based approach to scaling digital transformation culture in all our areas. I have called upon my network frequently for this work as well as other digital health work I have been involved with throughout the fellowship. I am passionate about ‘joining the dots’ for digital clinicians, who like myself felt quite isolated prior to the fellowship, and through greater networking have gradually built agency around a shared problem or common goal.
  3. Seek peer-to-peer support – As a Topol Fellow allocated to a peer sub-group, we took the opportunity to meet up (initially face-to-face for a short meeting) in alternate months (outside of workshops) and we then began prioritising 2-3 hours every other month to spend time together to listen, offer feedback as ‘critical friends’ and provide peer support. As a peer group of 4, we found we oscillated in where we were at different times in terms of progress and barriers in our work and helped each other through the ‘peaks and troughs’. These sessions were invaluable at maintaining project momentum, troubleshooting, seeking opinion and guidance on next steps which was different to what my project sponsor/mentor offered.
  4. Make every moment count – as a Topol Fellow invitations to a number of events will come to you. Whilst you will need to prioritise, it is important to take opportunities you may otherwise not have been invited to. For example I attended HETT 2019 and engaged with a speaker through asking a question related to their work. This then led to a series of opportunities within PHE to attend logic model workshops and gain expert support on the evaluation of my work.
  5. Share your problems, successes and failures – your lessons learned are potentially someone else’s failure about to happen. The NHS culture is not one of sharing failure. I would recommend that through the sharing of your work and a transparent account of both success and failure you are more likely to bring people along with your work and find that support comes from those who are ahead of you. Sharing is a really important part of the culture needed in digital transformation in the NHS.