These patients are sharing their data to improve healthcare standards

We’ve all heard about donating blood, but how about donating data?

Chronic non-communicable diseases (NCDs) like diabetes, heart disease and epilepsy are predicted by the World Health Organization to account for 57% of all disease by 2020.

This has led some experts to call NCDs the “greatest challenge to global health”.

Could data provide the answer?

Today over 600,000 patients from around the world share data on more than 2,800 chronic diseases to improve research and treatment of their conditions.

People who join the PatientsLikeMe online community share information on everything from their medication and treatment plans to their emotional struggles.

Many of the participants say that it is hugely beneficial just to know there is someone else out there going through similar experiences.

But through its use of data, the platform also has the potential for far more wide-ranging benefits to help improve the quality of life for patients with chronic conditions.

Give data, get data

PatientsLikeMe is one of a swathe of emerging data platforms in the healthcare sector helping provide a range of tech solutions to health problems, including speeding up the process of clinical trials using Real Time Data Analysis or using blockchain to enable the secure sharing of patient data.

Its philosophy is “give data, get data”. In practice it means that every patient using the website has access to an array of crowd-sourced information from the wider community, such as common medication side-effects, and patterns in sufferers’ symptoms and behaviour.

Patients share symptoms, treatment information and health outcomes. That information can then be turned into millions of data points about different chronic diseases and aggregates and organizes the data to reveal new insights.

Anyone who belongs to the online community will then be able to find out what the data has revealed. The data can also be shared with the healthcare and pharmaceutical industries to help develop better products, services, and care.

These industries are already actively embracing the use of data from other sources to help them better understand their patients, including genetic sequencing and wearable devices such as fitness band.

With this information, new methods of personalized or precision medicine are being developed to tackle everything from learning disabilities to cancer.

Brighter future

The crowdsourcing of data on chronic diseases opens up a huge wealth of information to medical researchers that they have been previously unable to access.

Its potential to radically change the treatment of chronic conditions and speed up the development of new drugs means that its potential was spotted early one. In 2007, when PatientsLikeMe had “just a few thousand” members, it was named as one of CNN Money’s 15 companies that will change the world.

The website was created by MIT engineer Jamie Heywood and his brother Ben as they sought to improve the treatment of their brother Stephen’s motor neurone disease, also known as amyotrophic lateral sclerosis (ALS). Data gathered through the platform was used in research published in September 2018 that dispels a common misconception that ALS does not affect the mind.

Heywood is a member of the World Economic Forum’s Global Future Council on Biotechnology, and he took part in the Annual Meeting of the Global Future Councils in Dubai, United Arab Emirates from 11-12 November.