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 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

Migration has set EU’s political clock ticking; the stagnating economy cannot help it and Turkey doesn’t cooperate

South Asia can become an innovation hub. Here’s how

Why a global recession isn’t inevitable

What does artificial intelligence do in medicine?

The benefits of a cashless society

Japan must urgently address long-standing concerns over foreign bribery enforcement

Coronavirus: Commission proposes to activate fiscal framework’s general escape clause to respond to pandemic

A Valentine’s Special: giving back, a dialogue of love

If on a summer’s night: is UK businesses’ “new deal” the only key to the “best of all worlds”?

World Retail Congress Dubai 2016: Retail’s night of nights

Virus Coronavirus: No time to die

Chart of the day: This is what violence does to a nation’s GDP

Palestine refugees’ relief chief warns Security Council money to fund Gaza operations will run out in mid-June

Africa-Europe Alliance: Four new financial guarantees worth €216 million signed under the EU External Investment Plan

European Junior Enterprises to address the significant skills mismatch in the EU between school and employment

What happiness can teach us about how we measure human development

Celebrities are helping the UK’s schoolchildren learn during lockdown

Taking fast road to ‘e-mobility’ central to a sustainable future: COP24

US-China trade war is a ‘lose-lose’ situation for them and the world, warn UN economists

This digital currency could build a more sustainable global economy

UN relief chief urges Security Council to back aid delivery, more funding for millions of Syrians hit by harsh weather

EU to finance new investment projects with extra borrowing; French and Italian deficits to be tolerated

Could the fourth wave of globalization help to end epidemics?

EU adopts rebalancing measures in reaction to US steel and aluminium tariffs

UN chief welcomes start of Church-mediated national dialogue in Nicaragua

It’s time for global businesses to accept local responsibility

WHO working to save lives following powerful earthquake in Albania

Parliament demands ban on neo-fascist and neo-Nazi groups in the EU

We won’t win the online security war without people power

Grave concern over escalating humanitarian crisis, casualties, displacement across northwest Syria: UN

Banks can fight financial crime. But we can’t do it alone

China-EU Summit on 16-17 July 2018: “Work together to address common challenges”, by China’s Ambassador to the EU

Juncker Plan exceeds original €315 billion investment target

Rising inequality affecting more than two-thirds of the globe, but it’s not inevitable: new UN report

25 years on from genocide against the Tutsi, UN Chief warns of ‘dangerous trends of rising xenophobia, racism and intolerance’

How cities, not states, can solve the world’s biggest problems

Mergers: Commission prohibits proposed merger between Tata Steel and ThyssenKrupp

Microplastics have been found in Rocky Mountain rainwater

Mali: Two peacekeepers dead after dawn attack, several injured – UN Mission

Russia and the West to partition Ukraine?

RescEU: MEPs vote to upgrade EU civil protection capacity

Professional practices of primary health care for Brazilian health and gender inequality

Universities need strategic leadership. Here’s what it looks like

The health of the human being in coexistence with a transformative biosphere

Voices of Afghan women ‘must be heard at the table in the peace process and beyond’ UN deputy chief tells Security Council

Managing and resolving conflicts in a politically inclined group of team members

Telemedicine and the Brazilian reality

UN’s Grandi slams ‘toxic language of politics’ aimed at refugees, migrants

G20 to Germany: Abandon miser policies

German elections: Is Merkel losing ground or Shultz is winning?

EU paves the way for a stronger, more ambitious partnership with Africa

‘An unprecedented fiscal response’ – political and business leaders on managing the coronavirus crisis

Urgent action needed to address growing opioid crisis

I have a rare disease. This is my hope for the future of medicine

Bill Gates’ top 10 breakthrough technologies of 2019

Eurobarometer: protecting human rights tops citizens’ list of EU values

Global aid appeal targets more than 93 million most in need next year

Help prevent children ‘from becoming victims in the first place’, implores Guterres at campaign launch

Don’t let the virus quarantine your mind –Ways to strengthen “Mental” immunity

The developing countries keep the world going

More Stings?

Advertising

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