Connecting data ‘about me’ to the world around me
This blog is third in a series explaining how Mydex’s personal data infrastructure works. It explains how our platforms help deliver our mission of empowering individuals with their own data, enabling them to use this data to manage their lives better and assert their human rights in a practical way on a daily basis.
Blogs in this series are:
- What IS a Personal Data Store?
- Personal Data Stores and Data Sharing
- Connecting ‘data about me’ to the world around me
- Identity as a Service
So far in this series we’ve talked about some absolute basics: how personal data stores work and how they enable a new approach to data sharing. But very often, to get something done, you don’t just need personal data. You also need data about the world out there — data about those aspects of the world which relate directly to your task at hand.
Ideally, what you want to be able to do is to connect your personal data to this relevant info ‘about the world’ so that the two types of data get integrated together, providing everything you need either to make a better decision or to act well on this decision, efficiently and effectively.
Today — friction, effort, risk and cost all round
Today however, this connection and integration happens only rarely. Usually, the two types of data are kept completely apart, which involves you in all sorts of to-ing and fro-ing, looking for which bits of data are relevant and working out how to bring them together.
Here’s an everyday example. You need to send something in the post but you don’t know the postcode. So you have to stop what you are doing, search for the right website, enter it, and then once there, search again for the information you need. Then you need to copy the information, leave the web site, and go back to what you were doing. A time consuming, irritating interruption — a classic example of what we call FERC — which stands for Friction, Effort, Risk and Cost.
This is just a trivial example. It gets more complicated — and the FERC just grows and grows — with more detailed, sensitive information such as the medicines that a patient should be taking, where there are more things to think about such as when you should take what dose, what other medicines you can’t take with it, contra-indications and so on.
This isn’t personal information as such. It’s information about the drug — information that is very important to the person at this time in this context, because it relates and connects directly to what they need and are trying to do.
Most services are made up of these two different types of information: Information about the person themselves and information about some aspect of the world that relates to what the person needs and is trying to achieve. Both types of information are needed if a person is to receive a comprehensive, quality service.
For example, health and care service providers need to integrate detailed data about the particular individual being cared for (personal data) with data about what services they need, based on their specific health conditions and medications they are to take (data about ‘the world’). This extends to referrals to specific services the individual may want to use as part of getting the support they need.
Currently, such data is kept separate, making it difficult and time consuming for people (both people needing support and service providers providing the support) to bring it together in a way that speaks directly to that particular person’s situation at that particular time.
The UK’s NHS has developed painstakingly curated lists of the medications it enables doctors to use, and of health conditions they are likely to come across. These lists are freely available and accessible to everyone … if, that is, you know they exist (in separate websites) and have the time, will and energy to jump through all the hoops you need to access and use them.
To do this, you first have to find the URL for the website in question (a different search process just to get started); navigate your way through mountains of information that’s not relevant for you; then once you have found, it capture the information in some way (such as copy and paste); go back to what you were originally doing; and find some way to integrate it into what you were trying to do.
Very often, well-meaning service providers develop general information packs for people dealing with a particular health condition. Very often these information packs are truly informative and helpful … but to find what’s truly informative and helpful in relation to this particular individual with these particular circumstances the person then has to wade through them, looking for the few bits of information that are particularly relevant to them right now.
Many people feel overwhelmed and exhausted by such processes. Often they feel overloaded with information, get confused. Sometimes frightened.
A breakthrough in service provision
We have developed our Master Reference Data service (MRD) to get rid of all this hassle so that people can access exactly the right information that they need, at the right time, from within what they are doing, seamlessly. This means they don’t have to stop what they were trying to do to go searching for it.
Instead, the individual needing the information (the person themselves or a front line team member in a service provider) can instantly look up exactly the right relevant information, sourced from a reliable, curated source as an integrated part of what they are doing — from within whatever application they are using. Individuals can link it into their own records stored in their Personal Data Store and service providers can use it to build personalised information packs and resources for the people they serve.
Take the example of a service provider arranging an appointment with a person who needs support regarding a particular condition or situation. The appointment is being arranged seamlessly online (no need for letters or emails). It mentions some medications which need to be reviewed and plus some other services they might want to use. As soon as the medication is mentioned, a link to exactly the right place in the curated list is created, so that both sides can instantly see exactly the right information. Same for services and specifics relating to the health condition involved.
Or, looking at it the other way round, an individual can develop an ‘About Me’ profile that summarises all the key personal information about themselves and their condition, medications, support services etc. They can integrate this information seamlessly into their own records, with all the links stored in their personal data store.
They can then share this full profile with a new service provider as and when needed, so that the new service provider gets presented with all the key information they need straight away, without delay. This also means that the individual doesn’t keep on having to tell the same story to different people over and over again.
Result: a much better quality service and process with much lower FERC (Friction, Effort, Risk and Cost) for both the individual and the service provider.
Getting the details right
Of course, explaining it like this makes it sound simple (as it should be). But behind this simple experience lies a lot of technicalities. So, for example, a key part of the Master Reference Data Service is the detailed support services for developers covering such issues as authentication to access the service, how cross-service search works, and help support services.
At a higher level, Figure One below sums up how we provide these services.
It starts with the curated data sources themselves (the coloured circles at the bottom of the diagram). We access the data from these curated data sources and crunch them so that a) people using different software languages or formats can easily access the data (interoperability) and b) so that the data they contain can be sliced and diced so that only those bits of data that are particularly relevant to a person at a particular time can be easily presented (configuration).
This means that if you are looking for information about a particular thing that may be referred to in a range of different curated databases, you can search for this information from within our service across all these different databases, all at the same time.
For example, a patient with a particular condition could access information about the condition itself, information about medicines related to treating that condition, and about local services or community groups supporting people with that condition.
The top of the diagram then shows subscribers subscribing to any and all curated data sources that are relevant to them.
Currently these data sources include ALISS (A Local Information System for Scotland) and NHS curated content covering a wide range of areas.
ALISS is a service designed to help citizens find help and support close to them when they need it most. ALISS is maintained and published by the Health and Social Care Alliance Scotland (the ALLIANCE) and is funded by the Scottish Government.
The NHS databases cover:
- Health Conditions information for the top 600 health conditions experienced by People. Symptoms, assessments, testing, treatment and implications.
- Live Well, which covers advice about healthy living, including eating a balanced diet, healthy weight, exercise, quitting smoking and drinking less alcohol, sexual health and addiction support.
- Mental Health support. This covers feelings, symptoms and behaviours, mental health conditions, advice for life situations and events, self-help, mental health services, mental health for children, teenagers and young adults, talking therapies, medicine and psychiatry, social care, mental health and your rights.
- Medicines This covers content about common medicines. Includes how and when to take the medicine, possible side effects and answers to common questions.
- Pregnancy , including modular advice and guidance about trying for a baby, pregnancy, labour and birth.
Many of these curated lists of information also link with each other. MRD makes it easy to link and pull them together into a seamless payload that can be integrated into any application. This reduces the amount of duplication involved across organisations and their applications, improves the data quality and reduces the complexity of delivering interoperability and integration.
Subscribers accessing this curated content via our MRD API can be confident that the information they are accessing is accurate and up-to-date. This is because each one of them is refreshed once a week to include any changes that may have been made in the last seven days.
The list of data services covered by our MRD service is continually growing. For example, we are in the process of adding the World Health Organisation’s International Statistical Classification of Diseases and Related Health Problems (ICD-10), and the Systematized Nomenclature of Medicine — Clinical Terms (SNOMED CT) which is another standardised, multilingual vocabulary of clinical terminology that is used by physicians and other healthcare providers for the electronic exchange of health information.
We are seeking to enable standardised lists of the sorts of adaptations people may need in their homes if they are disabled, frail or at risk of falling, postcode look-ups, and (further into the future) comprehensive lists of operational GPs and dentists.
We also include (or will soon include) data services designed to help service providers improve the quality of the personal data they hold and share. These include personal data quality relating to:
- Race and Ethnicity, and Age Range classifications.
- Activity and Measurement reference tables covering the full spectrum of datasets supporting wearables (for example relating to activity types, temperature, sleep and exercise)
- Postcode and geolocation cross references
The potential list is endless. In this blog we have only talked about health and care, but the concept applies to every aspect of life. The underlying goals and core processes remain the same: it’s all about bringing exactly the right information to people at the right time, as and when they need it.
Conclusion
Personal data lies at the heart of every service that deals with an identified individual: we need to be able to access and use it to manage our lives better. But very often, for the service to really fulfil its function it needs to relate information about some important things of ‘the world out there’ to the specific needs and context of the individual, as identified by their personal data.
Very often, the key to service quality and efficiency is the ability to access and integrate both types of data so that all the right data is made available at the right time, and so that everybody involved can be confident that the information they are using is reliable (i.e. comes from a professionally curated source).
We have spent years developing our Master Reference Data Services so that both individuals and service providers can use data in this way. Its potential is simply enormous.
