These patients are sharing their data to improve healthcare standards

Aerial view photography of person holding arm while pressing blood pressure machine (Unsplash, 2018)

This article is brought to you thanks to the strategic cooperation of The European Sting with the World Economic Forum.

Author: Pushpam Kumar, Chief, Ecosystem Services Economics Unit


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.

Heart disease and stroke are the world’s biggest killers.

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.

the sting Milestones

Featured Stings

Can we feed everyone without unleashing disaster? Read on

These campaigners want to give a quarter of the UK back to nature

How to build a more resilient and inclusive global system

Stopping antimicrobial resistance would cost just USD 2 per person a year

Draghi’s negative interest rates help Eurozone’s cohesion

How COVID-19 could open the door for driverless deliveries

A new Europe for people, planet and prosperity for all

€5 billion of EU energy efficiency project money spent on “comfort”

2030 development agenda: Major breakthrough for world of work

UN chief saddened at news of death of former US President George H.W. Bush

It is me

Consumer protection: Deal on EU-wide rules for those sold faulty products

Blockchain is not a magic bullet for security. Can it be trusted?

Towards a climate-neutral Europe: EU invests over €10bn in innovative clean technologies

Draghi indirectly accuses Germany of using double standards in financial issues

UN court increases sentence of former Bosnian-Serb leader to life imprisonment

EU-US: A new transatlantic agenda for global change

More unemployment and lower wages to make European workers competitive?

UN chief applauds Bangladesh for ‘opening borders’ to Rohingya refugees in need

The gender gap of medicine in 2018

Turn toxic e-waste into a source of ‘decent work’, UN labour agency urges

Why Trump’s tariffs are good news for US garlic farmers

Lifting the lid on policy decisions across Africa

Homicide kills far more people than armed conflict, new UN study shows

10 things you – and your government – should know about competitiveness in the Fourth Industrial Revolution

Why 2020 will see the birth of the ‘trust economy’

We must work together to build a new world order. This is how we can do it

Digital mental health is here – but how do we ensure its quality?

The collision of these 3 geographies is creating a new world order

Here’s why e-mobility must be at the heart of the green recovery

VAT: EU Member States still losing almost €150 billion in revenues according to new figures

Switzerland: prepare for population ageing to maintain high living standards

First seat projections for the next European Parliament

This NASA-inspired technology converts carbon dioxide into food. Here’s how

Our children’s career aspirations have nothing in common with the jobs of the future

Moves to create a Kosovo army have ‘deteriorated relations’ with Serbia: UN peacekeeping chief

EU adopts retaliative measures in response to US steel and aluminum tariffs

1 in 5 deaths globally caused by fossil fuel pollution, a new study reveals

Mental health: simple ideas that can make a difference

The technologies – and thoughtful collaborations – that can build resilience in the food system after COVID-19

European research priorities for 2021-2027 agreed with member states

Contribution of healthcare professionals towards the 2030 Global Health Agenda

Joint EU-U.S. statement following the EU-U.S. Justice and Home Affairs Ministerial Meeting

UN committed to helping Haiti build better future, says Guterres, marking 10-year anniversary of devastating earthquake

10 months were not enough for the EU to save the environment but 2 days are

Syrian crisis is ‘clearest example’ of foreign investment in terrorism, Deputy Prime Minister says at UN

Coronavirus: the truth against the myths

“Only through energy policy we can trigger competitiveness”. The Sting live from #EBS2015: Energy Union – When will it happen?

‘Signs of hope’ toward a political settlement in Yemen, UN special envoy tells Security Council

EU leaders slammed on anti-tax evasion inaction and expensive energy

Ceasefire holds in Tripoli, but core problems remain, says UN Libya mission chief

Quality education an ‘essential pillar’ of a better future, says UN chief

Stateless Rohingya refugee children living in ‘untenable situation’, UNICEF chief

Quality Education on the table at the European Parliament

The developing world must get ready to adapt its trade to climate change

Five cities short-listed to become the European Youth Capital 2017

Cambodia’s digital currency can show other central banks the way

Eurozone: Statistics don’t tell the whole story

We don’t know how autonomous vehicles will depreciate – and that’s a problem

4 key trends on how COVID has impacted women in business

Final turnout data for 2019 European elections announced

Investors have a role in securing our shared digital future

Parliament demands democratic scrutiny over national recovery efforts

More Stings?

Speak your Mind Here

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s