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Vision Coach: a novel digital platform for managing patients with diabetic macular edema (DME)

Over the last year or so, we’ve been working with Bayer ophthalmology on a novel digital platform — Vision Coach — to support patients living with, and clinicians treating, diabetic macular edema (DME). We’re excited today to announce the launch of Vision Coach in the UK and Italy, following on the heels of Spain. Stay tuned for launches in more countries globally over the next few months.

Over 2019, we’ll be piloting Vision Coach to assess its potential. We’ll be updating as we go, but for now, here’s an introduction to the problem domain, the platform, the Healthforge services that support it, and what to expect for the future.

Background

DME is the leading cause of vision loss for people with diabetes mellitus. It affected an estimated 21 million globally in 2010¹ and is set to grow to significantly in future, driven in part by growth in the underlying diabetes population.

In a healthy eye, light is detected by light sensitive cells in the retina at the back of the eye, where it is converted into electrical signals that are sent to the brain, which interprets them as an image. The macula is the central area of the retina where the concentration of light sensitive cells is particularly high and is responsible for central (reading) vision.

In patients who have had diabetes for a prolonged period, the blood supply to the macula becomes damaged, compounded by high blood pressure and high cholesterol levels. Damaged vessels become permeable, leaking fluid into the macula, which becomes swollen (“macular edema”), leading to impairment of central vision. This can have a serious impact on quality of life, for example by reducing a person’s independence or ability to work.²

Standard of care

The standard of care for most patients with DME is anti-VEGF therapy. Anti-VEGFs work by inhibiting a protein called vascular endothelial growth factor (VEGF). Since VEGF mediates blood vessel permeability, amongst other things, VEGF inhibition works by inhibiting this process, helping to reduce blood vessel leakage and the resulting swelling that can damage the macula and a person’s vision.

Anti-VEGFs are administered as intraocular injections to patients with macular edema revealed, typically, by Optical Coherence Tomography (OCT) scans. Though this sounds pretty awful, the use of topical anaesthetic and good injection skills generally combine to make injections a comfortable procedure for most patients.

Problem domain

Successful DME management is about more than choosing the right therapeutic. To name a few:

  • Patients require access to care, therapies and information; education to understand their condition and treatment; help with defining suitable goals, clinical or lifestyle
  • Clinicians require help easing their capacity constraints, providing education to patients despite the time-pressured realities of clinic, and working with (often) poorly designed software.

Vision Coach was conceived to help Bayer go beyond therapeutics by defining a value-add digital service to support their stakeholders’ non-therapeutic needs, focusing initially on two areas — patient adherence and provider capacity.

Adherence & capacity

A large number of DME patients who are treated with anti-VEGFs fail to stick with therapy, contributing to suboptimal visual outcomes. As with non-adherence more generally, there are a few types of potential causal factor at work (see Figure 1). Provider capacity issues fall under the health system/team factors.

Figure 1. The WHO’s 5 dimensions of adherence³

As a first pass, we decided to focus on the following:

  • Social/economic factors e.g. education. The DR Barometer —a 41 country study looking at the experience of living with, managing and treating diabetes and diabetic eye disease — highlights that both patients and ophthalmologists identify lack of education as a key barrier to improving self management and outcomes.⁴
  • Patient-related factors e.g. psychological attributes such as beliefs, motivations, confidence levels and expectations. There is evidence that behavioural interventions are effective in primary prevention settings⁵. We thought it reasonable, though by no means certain, that a behavioural approach to non-adherence in our tertiary prevention population might also have utility.
  • Healthcare system/team factors e.g. capacity constraints. Provider capacity is an issue that constrains care delivery to patients and is typically driven by a number of factors (e.g. physical space, staffing, availability of financial capital, technology). Again, this was highlighted as a key barrier to improving patient outcomes in the DR Barometer study.⁶ Longer term, the Vision Coach project has ambitions to address this.

Vision Coach

The Vision Coach platform consists of applications for clinicians and patients in the DME ecosystem, summarised in Figure 2.

Figure 2. Vision Coach platform.

Patient mobile app (iOS, Android)

  • Provides access to and ownership of important sight score data to facilitate more active management of a patient’s disease
  • Help setting meaningful goals targeting health-promoting behaviours, and tracking progress against them
  • Educational content to help increase patient self-confidence and help them take charge of their DME
  • Integration with native platform accessibility tools to ensure ease of use for users with differing levels of visual impairment

Clinician app (web)

  • Workflow support for: patient and appointment management, treatment plan creation, and recording encounters and sight scores
  • Dual data entry model, allowing patients to enter sight score data, and clinicians to modify this data if it is incorrect
  • A view of patient activity between appointments

Patient education site (web)

  • Accessible content covering the entire patient journey, from awareness through diagnosis to treatment
  • Integration into patient mobile app workflows

Implementation

The Vision Coach apps work against regional instances of the Vision Coach API deployed to highly available, container-centric infrastructure across a handful of AWS global regions. The platform’s storage model is based on the HL7 FHIR standard, supporting important requirements around data exchange and interoperability. Data confidentiality, integrity and availability are, as always in healthcare, at a premium and so, in addition to AWS’s broad compliance programme, we run our own, covering the people, processes, technology and physical locations we use to deliver the Vision Coach service. This programme is audited by an independent third party and accredited against the industry standard for information security, ISO27001.

In short, Vision Coach is a cloud native, highly available, container-centric, FHIR-first, ISO27001-compliant platform fit for the kind of future we want to see in healthcare software innovation! We’ll be publishing more on the technical architecture soon.

Healthforge cloud services

Healthforge exists because shipping healthcare software that meets common requirements for data interoperability, security and compliance is hard. And it’s even harder without good tools. At Healthforge, we’re working to produce these tools to lower the barrier to innovation in healthcare, and get better software into the hands of the people who need it most — patients and clinicians.

Figure 3. Healthforge’s cloud service supporting Vision Coach delivery

Vision Coach makes use of a number of Healthforge’s own tools (Figure 3), in particular:

  • Kaji. Our implementation of the FHIR standard and value-add tooling around it. FHIR is the future of healthcare data exchange — Vision Coach is a FHIR-first platform built for this future.
  • Flux. A tool for managing the artefacts in an ISO27001-compliant information security management system (ISMS), and executing key life cycles within it.
  • Environments: Secure, cloud native, container-based, managed environments for running and scaling healthcare applications. All Vision Coach environments are based on Healthforge environment templates, optimised for security and run by an ISO-27001 accredited Ops team.

You need tools like these to get innovations like Vision Coach to market faster and at a reasonable cost. We’re really excited to be releasing them to an external audience over the course of 2019. Stay tuned.

The future

What we’re shipping now together with Bayer, our industry partner, is a first pass. We intend to build Vision Coach’s future roadmap based on our experience piloting the platform. Some things we can anticipate, like more support for diabetes-related requirements and stakeholders, and more integration with legacy systems and devices. Others will emerge throughout the course of 2019. We look forward to helping patients and clinicians get maximum value from Vision Coach throughout the pilot, and improving it based on their needs.

  1. Yau JW, Rogers SL, Kawasaki R, et al; Meta-Analysis for Eye Disease (META-EYE) Study Group. Global prevalence and major risk factors of diabetic retinopathy. Diabetes Care. 2012;35(3):556–564. doi: 10.2337/dc11–1909.
  2. DR Barometer. The Diabetic Retinopathy Barometer report: global findings, https://drbarometer.com/read-the-reports/, pp.71–72.
  3. World Health Organization. (‎2003)‎. Adherence to long-term therapies: evidence for action / [‎edited by Eduardo Sabaté]‎. Geneva: World Health Organization. http://www.who.int/iris/handle/10665/42682.
  4. DR Barometer, p.85.
  5. Baker MK, Simpson K, Lloyd B, Bauman AE, Singh MAF. Behavioral strategies in diabetes prevention programs: A systematic review of randomized controlled trials. Diabetes research and clinical practice. 2011;91(1):1–12.
  6. DR Barometer, p.43. Middle and lower income countries tend to be more affected by this, though it’s a known problem in high income countries too.

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