Open Data Innovation within the Health Industry | Global Case-Studies |

A delicate balancing act between respecting patient's privacy and using essential open data to improve treatment and reduce the skyrocketing costs of healthcare is seeing calls for greater transparency and openness across the globe. We examine three unique examples of where Open Data is changing the outcomes of Healthcare across the world.

United Kingdom

The Royal National Orthopaedic Hospital (RNOH) National Health System (NHS) Trust has signed a ground-breaking deal with IT company, Inter-neuron CIC to develop and implement an Open Data platform that will see one of the world's largest health facilities evolve its legacy software platforms. The development will include the creation of Open standards for the Trust's full health data repository, allowing the transfer of up to a century of health data between obsolete IT systems and the new platform. 

From left to right: Wayne Gibson, Matt Conway, Saroj Patel (RNOH CIO), Joel Ratnasothy, Rob Hurd (RNOH CEO)

The RNOH is based in Brockley Hill, Stanmore and Bolsover Street, Central London and is globally recognised as a centre of excellence in all aspects of Orthopaedic treatments. Treating patients from across the UK, staff focus on primary care or treatment of complex or rare conditions often hosting patients from far outside of the Greater London catchment. Patients are also referred to the hospital from many other parts of the world including Africa, Europe and the Middle East.

Speaking at the first Digital Health Rewired Conference and Exhibition in London on 26 March, Toma? Gornik said using a system with open standards allows data to be more easily transferable between applications when they’re upgraded. The need to upgrade health software and the network was increasing at an exponential rate.

Gornik said health data is “not much different” to other data, except that it has to last much longer.

“In healthcare, we need to keep the data from 100 years, or the lifetime of the patient. There is no application that lasts 100 years, even the best ones will need to be replaced every 15-20 years depending on how much money you have,” he said. "Another “big advantage” to an open platform, is that it “fully engages” clinicians."

Whilst the issue of privacy and access to shared and identifiable data is long from resolved, the Trusts of the NHS continue to adopt new technologies, open standards and open data practices anticipating greater adoption of sharing and transparency of critical health data. The launch of the NHS Open Data Beta site in 2018 marked the painfully slow adoption of what is some are calling "The saving of the NHS". 

"How Open Health Data can save the NHS" (2018), an article published in Towards Data Science by Hugh Harvey, explored how the UK's crippled health system could redeem itself and promote evolving treatments and technologies via Machine Learning and Artificial Intelligence technologies if it would share large amounts of cleansed, anonymised and 'ground-truthed' data with the health and bio-med sectors.  

This concept is not un-preceded, with the US National Institutes of Health releasing 100,000 completely anonymised Clinical Patient Records (CXR) for Public Use in 2018. This records of Open Data proved to be one of the most impactful events in Artificial Intelligence research and development of the decade. The 100,000 CXR data-set has been eagerly consumed by Stanford, MIT and Google to create multiple algorithms for pathology, radiology and the latest strains of medical imaging not yet available to the public. 

The signing of the agreement between RNOH and Inter-neuron CIC may not be releasing patient records to the world, but it will see the creation of Open Standards in the Data and the Superhighway that will see the transfer of critical treatment data shared between existing staff. If the Open Data Beta site is deemed a success, we could see RNOH follow in the footsteps of the National Institutes of Health.

Kenya

Source: UNICEF, Kenya. Child Survival and Development (2019)

Experts across Africa are calling for the urgent creation and publication of Open Data to help solve a nutritional crisis in the country of Kenya. The adoption of an Open Data regime will assist the growing disaster of health issues experienced by the children in a variety of ways.

Kenyan Health Experts including senior nutrition specialist, Esther Omosa, admitted that "The nutritional problem is a major challenge to achieving the country's vision of 2030 and it's a commitment to Sustainable Development Goals (SDG's) in Kenya." 

There are two main issues at hand in Kenya. The lack of visibility and transparency is seeing the startling reality of childhood starvation not being addressed, and the lack of Open Data in weather and cropping is impeding the farmers and agriculturists desperate to help the dilemma.

"We need open data systems to avail information on food consumption, especially fruits and vegetables to keep our populations healthy," Omosa added during her presentation in Nairobi.

The cases of childhood health issues, including the cases of development-stunting, malnutrition, and anaemia due to insufficient nutrition are on the rise in children across Kenya. Approximately 26% of children aged five-years are suffering from stunting and longer-term health issues. Omosa believes that access to Open Data systems will assist in intensifying the development and adoption of nutrition programs by clinicians, government and the public.

Boniface Akuku, the Director of Information, Communication and Technology at Kenya's Agriculture and Livestock Organization (KALO) agreed, "The technology will make it easier for experts to gather information and act within a short time. Once Open Data is fully operationalized in the country, cases of malnutrition in far-flung rural areas will end as information will be received and acted upon on time."

As the adoption of technology and IT systems continues to grow across officially channels it is hoped that information gathering will be automated on data form for easier communications. It is this lack of up-to-date data in the hands of the government that many blame for delaying action by policymakers; paralysed by a lack of evidence and data to make the necessary decisions.

United States America

Source: Wikipedia. Healthcare groups urge Congress to support a bipartisan bill.

Despite decades of efforts from policymakers, the medical profession and lobbyists, the US Health Care industry continues to reach new crisis levels with costs skyrocketing across every sector of care. Whilst the debate over privacy concerns continues to rage, one group is focusing on reducing the costs of attaining medical treatment by releasing data on costs, processes and outcomes of treatment. 

A Patient's personal health care data is prohibited from distribution and is protected by numerous privacy laws. It is this reason that is most commonly quoted by the healthcare industry when faced with a request to open up its data for distribution. But there is more to health data than identifiable treatment and patient records. Whilst personalised data is restricted, other forms of data are often caught up in the web of silos and business processes, even those types of data that may assist in reducing the cost of healthcare.

One train of thought has data on costs and effectiveness being shared to align physicians towards lowering the costs of procedures and raising the quality of care across the sector. 

"According to a recent study published in the Physician Leadership Journal, 91 per cent of specialists reported that increasing access to cost data would improve care, and only 40 per cent said their organisation was doing so. The topics of cost and finance also deserve more attention in medical school, so that new physicians learn how to better incorporate considerations of cost and value in their clinical decision making." Jim Mueller, Mueller QAAS, 2019.

With the premise set, one could be excused for questioning why the sharing of cost and process data is not commonly published openly and for all to access. In a country where the Health Insurers commonly claim all health data as a business asset and often rely on data-sets as a valuable asset, one Not-for-Profit had seemingly implored them into sharing; if only for a short period of time. 

Founded in 2011 as a non-partisan nonprofit organisation, The Health Care Cost Institute (HCCI) is dedicated to performing research and complex analytics to improving economic issues impacting the U.S. healthcare system. HCCI reports are relied on by policymakers and academics based on de-identified claims data received from four of the five largest health insurers in the United States of America (UnitedHealthcare, Aetna, Humana, and Kaiser Permanente). It also operates the website Guroo.com to help the public make better health care decisions by openly publishing the average prices for services at the national, state and local levels.

With the debate over the need for greater transparency in health care a hot ticket on Congress' card; both the Republican and Democrats appearing the agree with calls for openness, HCCI seems to have lost the cooperation of two of the big four. Since the withdrawal of UnitedHealthcare data in 2018, and now word that Humana plans to follow suit, HCCI has been unable to publish a 2018 update. Unless Congress agrees to force the Healthcare giants' hand, it seems that the public will once again lose and health care costs are predicted to rise further.