Turning patient experiences into data for research.
MyLDN is the world's largest remote study of Low Dose Naltrexone. Built for the LDN Research Trust, it turns everyday patient experience, across a huge range of health conditions, into structured, longitudinal data: real-world evidence, at scale.
This project was completed by Dave prior to founding BettaSites, as part of his professional experience, not a BettaSites client project.
The Bigger Challenge
Beyond another health-tracking app.
People around the world were using Low Dose Naltrexone across an extraordinarily diverse range of health conditions. Individual experiences were valuable on their own, but research needs structured data.
The challenge was to build technology capable of capturing those experiences consistently over time, across very different conditions, symptoms, medications and outcomes, while handling sensitive health information responsibly enough to make the resulting data useful for research.
Breadth Of The Challenge
One platform. Very different health experiences.
The LDN Research Trust's work spans a very broad range of health conditions. A small selection, drawn from the much wider range represented within the Trust's resources:
These are examples only, drawn from the broader range of conditions represented within the LDN Research Trust's work. They are not a claim that LDN has been clinically proven effective for any specific condition.
Two Sides Of One Platform
One platform. Different needs.
The app needed to work for the people using it day to day, while also giving the LDN Research Trust a more connected way to organise information, support participation and bring its resources together.
For Individuals
A clearer way to track the whole picture.
The app gave individuals one place to record and review the factors that mattered to them, helping bring different parts of their experience together rather than relying on separate notes or tools.
- LDN dosage and medication
- Pain and symptoms
- Sleep
- Mood
- Energy and fatigue
- Quality of life
- Diet and exercise
- Personal notes and journalling
- Reports showing changes over time
For The LDN Research Trust
Bringing a complex body of information into one connected platform.
The app gave the LDN Research Trust a digital way to bring together information relating to 174 conditions for which LDN was being used or investigated, alongside education, tracking and user participation.
It created a more structured and accessible experience for people using the Trust's resources, while connecting information that would otherwise have existed across multiple areas.
- Information relating to 174 conditions
- LDN education and resources
- User participation
- Health tracking
- Reporting
- A more connected digital experience
Built Around Data
Useful to the individual. Valuable to the bigger picture.
The platform was designed so that, with consent, structured patient-reported information could contribute to a wider research picture.
Tracking was therefore useful not only to the individual, but could also create consistent information over time for approved research use, with identifying information removed according to the relevant data-handling arrangements.
Longitudinal Data
Tracking change over months and years, not a single snapshot.
Multiple Conditions
Accommodating very different diagnoses within one consistent structure.
Dosage Changes
Recording how LDN dosage shifted over time.
Medications & Supplements
Capturing what else people were taking alongside LDN.
Patient-Reported Outcomes
Structured, first-hand reporting of how symptoms were changing.
Changing Symptoms
Following how individual experiences shifted, condition by condition.
Data Consistency
Keeping information structured enough to compare and analyse.
Sensitive Information
Handling personal health data with appropriate care throughout.
Research Requirements
Structuring data to answer real research questions.
Statistical Analysis
Data shaped to be usable for rigorous statistical work.
From One Person To A Bigger Picture
One person's health record can tell their story.
Thousands of structured records can help researchers start looking for patterns.
The platform was designed to help bridge that gap: individual patient experiences contributing, with appropriate privacy safeguards, to a larger research dataset that could be interrogated across conditions, dosage, symptoms and outcomes.
Researcher Access
Built for approved research access.
The research side of the platform was designed around a clear separation between personally identifiable patient information and data intended for research and statistical analysis.
- An authorised researcher dashboard
- Interrogating datasets across conditions, dosage and outcomes
- Exporting pseudonymised research data for specialist statistical analysis
- Personally identifiable information kept separate from research data
The technology was designed to enable research. It did not itself establish the clinical effectiveness of LDN for any condition.
Working With Researchers
Software shaped by research questions, not just a spec.
Building technology for research meant a different development process to a conventional commercial application. Dave worked with research and statistical expertise, including individuals associated with Cambridge and Stanford, to understand how the information needed to be structured and made useful for analysis.
That meant asking a different set of questions throughout development.
- What information will researchers ultimately need?
- How must that information be structured?
- How can it be collected consistently?
- How can it remain useful across very different conditions?
- How can sensitive information be appropriately protected?
Global Scale
Part of an international community.
The LDN Research Trust operates internationally, supporting a community of patients, clinicians, pharmacists and researchers.
The platform sat within that wider international community, spanning the UK, Europe, the USA, Canada, Australia, New Zealand and beyond.
100,000+
People the Trust states it has helped access LDN
Figures as published by the LDN Research Trust.
Key Capabilities
What the platform brought together.
More than an app. Infrastructure for evidence.
The LDN Research Trust project brought together software development, digital health, sensitive data, research requirements and statistical analysis in one ambitious platform.
The patient-facing Health Tracker was only the visible part. Behind it sat a much bigger challenge: how to turn thousands of individual experiences into structured, longitudinal data capable of contributing to meaningful research.
It is a strong example of the kind of work behind BettaSites today. Not simply building what someone asks for, but understanding the bigger problem, working with specialist expertise and developing the technology needed to solve it.
Related Services
Capabilities behind this experience.
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