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.

Advertising

Advertising

Advertising

Advertising

Advertising

the sting Milestone

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

The next EU President will first have to drink his tea at Downing Street

Black Panther’s ‘General Okoye’ joins the fight against gender-based violence

ECB’s Draghi favours a cheaper euro to serve all Eurozone countries

Do not confuse food charity with ‘right to food’, UN expert tells Italians, labelling food system exploitative

Artificial intelligence summit focuses on fighting hunger, climate crisis and transition to ‘smart sustainable cities’

How India is harnessing technology to lead the Fourth Industrial Revolution

Consumers suffer three defeats

‘Crimes against humanity,’ ‘war crimes’ and risk of new ethnic violence in DR Congo, warn UN experts

The vehicles of our future

South Sudan’s foreseen genocide: from “Never Again” to “Again and Again and Again”?

Women to save Europe’s own labour resources

The new assembly lines: Why AI needs low-skilled workers too

How will the NATO-EU competition evolve in the post Brexit era?

Monday’s Daily Brief: human rights in the Near East and a Forum for Refugees

Gender equality and medicine in the 21st century: an equity unachieved

Vaccine hesitancy: a pregnancy related issue?

Erdogan’s electoral win on a ‘me or chaos’ dilemma means trouble for everybody

“None of our member states has the dimension to compete with China and the US, not even Germany!”, Head of EUREKA Pedro Nunes on another Sting Exclusive

US-North Korea summit in Singapore ‘a promising development’ says Guterres

UN chief appoints Luis Alfonso de Alba as Special Envoy for the 2019 Climate Summit

Use space technology to build a better world for all, urges UN chief

These 3 countries are global offshore wind powerhouses

A Sting Exclusive: “The competitiveness of Europe depends on a digital single market”, EPP President Joseph Daul highlights live from European Business Summit 2015

Juncker’s Investment Plan in desperate need for trust and funds from public and private investors

UN chief welcomes new push by El Salvador’s political parties to begin fresh dialogue

Crimea, a wicked game of political chess and a ‘big’ coincidence

Would you let an AI vote for you?

The EU adopted €297 million in concrete actions for refugees and local communities in Jordan and Lebanon

The German automotive industry under the Trump spell

Relieving the suffering of dying: Home Palliative Care as a spiritual coping strategy

What can Darwin teach the aviation industry about cybersecurity?

Burned in the Amazonian forest: Your health may be in danger

MEPs demand Bulgaria’s and Romania’s swift accession to Schengen area

‘No shortcuts to a healthier world’: WHO chief sets out health priorities for the decade

Stop violence against women: Statement by the European Commission and the High Representative

Nordic noir: The unhappiness epidemic affecting young people in the world’s happiest countries

Is the energy industry meeting its sustainability goals?

The European Sting Cookie Policy

The punishment gap: how workplace mistakes hurt women and minorities most

Why a cash-free future might not be as close as you think

UN agencies call for action to bolster rights of Europe’s stateless children

The hidden downsides of autonomous vehicles – and how to avoid them

Gaza blockade causes ‘near ten-fold increase’ in food dependency, says UN agency

Joint UN-Congolese strategy needed to address insecurity following deadly attacks

A refugee from Syria cries out: “I’m not just a number!”

European Youth Capital 2018 : Cascais

FROM THE FIELD: Persons with disabilities bike towards sustainability

Unemployment and immigrants haunt the EU; who can offer relief?

EU-China trade: closer ties as US-China trade battle brews

Amazon, a pair of shoes and my Data Privacy walks away

EU Commission: a rise in wages and salaries may help create more jobs

A poor kid died just now. Do you know why?

Hunger in Yemen: WFP considers aid suspension in face of repeated interference by some Houthi leaders

Discovering Europe: Free EU rail pass for 18 year olds

10 predictions for the global economy in 2019

Tuesday’s Daily Brief: Libya civil war, African displacement, global trade tensions, terrorists’ children ‘secretly detained’, and more

Green deal for Europe: First reactions from MEPs

Three ways China can make the New Silk Road sustainable

In the age of the tourism backlash, we need ‘destination stewards’

MEPs vote for upgrade to rail passenger rights

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