Data Decides About Life or Death

Personal health data and its digitalisation has been quite controversial. Yet, the necessity to find ways to anonymise patients’ data, aggregate them, analyse them, and discover the essence to help to save lives, is indisputable. Here is how you do it.

Halil AksuContent Editor

June 20, 2022
7min read

What does it mean to “know better?”

From a patient perspective, it means a lot, it actually decides between life or death. How on earth can we be this irresponsible with human life when we could so easily protect it? We could argue that this irresponsible behaviour, of not including all available data into healthcare decision making, should be treated as harshly as murder. Unfortunately, this happens every day, thousands of times over, unnecessarily.

Yes, healthcare data is the most personal, the most sensitive, and the most private data of all. But we must find ways to anonymise patients’ data, aggregate them, analyse them, and discover the essence, to help to save lives. It’s as simple as that…

With our smartphones, digital watches, and other wearable technologies, we generate tons of healthcare data, continuously. We are generating considerable data with every visit to the doctor or the hospital.

Epidemics and pandemics could be predicted, and early preventive actions could be taken. Drugs could be discovered much faster, much cheaper, and be much more effective than they are right now through conventional methods. The efficiency, tolerance, and right dose of drugs could be examined much more precisely and on a genetical level. This is called the 3P’s: precision, preventive, and personalised medicine.

 

One small step for the NHS, one giant leap for mankind

The NHS provides healthcare services to UK citizens every day. The UK government has gained a lot of experience and managed extraordinary circumstances during the Covid-19 pandemic. That knowledge and consequent improvements were translated into a digital transformation strategy for the health and care sectors. At its epicentre lies data and its analysis.

Personal health data and its digitalisation has been quite controversial in many countries. Conspiracies and their theorists have spread many false claims during the pandemic. Many feelings were targeted on purpose to stimulate misbelief, suspicion, doubt, even hate against lawmakers and tech giants.

Camilla Cavendish from the Financial Times just wrote an article on the criticality of this issue. Healthcare providers have are interested in collecting the data but are suffering from technical incompetence. Drug makers and other stakeholders have a vested interest in the data. Technology and consulting companies are most definitely interested in providing solutions to the problem. But the public is very confused. Most people understand that data is gold dust for research and in the quest for better healthcare. But at the same time, they neither trust the lawmakers nor the private sector, especially healthcare providers and payers. To gain trust, transparency is critical. The public must understand what’s been done, why, how, and especially who has access to what kind of data, and under what kind of circumstances.

Another very powerful example has come to light in Israel. The Israeli Ministry of Health has published regulations to provide anonymised data for research purposes, leading to drug discovery, better treatment, and an entrepreneurial ecosystem of biotech and health-tech start-ups. This is very good example of how it can be done and its positive impact on all stakeholders.

Within the last two decades, Israel turned into a biotech and health-tech powerhouse. As the “start-up nation”, they promote deep-tech research and entrepreneurship at the same time. What’s working in Israel is soon to be deployed globally. Receiving investments from around the world, Israel’s healthcare sector is a true success story.

 

Global and universal actions are required

This means it can be done, if there is a vision, leadership, and consensus among all stakeholders, and the relevant capabilities are in place. What could be more important than saving lives? You might remember that goal #3 of the United Nations Sustainable Development Goals (UN SDG) is about “accessing quality healthcare for all”.

We are far from achieving this target. But, jointly, we could do much more to get closer. All the healthcare data in the world could be brought together for better and deeper research. All countries and companies could collaborate in a non-competitive way to fight certain diseases, epidemics, and pandemics. Covid-19 showed just how vulnerable we are.

Data is the most critical input to solve these issues. The good news is that all the data required is available. The bad news is that it is scattered around the globe, and nobody is taking care of compiling it. For optimists, this means great news and many opportunities. And this is how we need to approach this challenge.

 

Healthcare must be our focus, but there are many other sectors to go after.

The even bigger and better news is that there are many more SDG goals and related industries to go after. Education, infrastructure, energy, finance, logistics, construction, and agriculture, just to name a few.

SDG Goal #2 is about ending hunger. Agriculture, related manufacturing, supply chains, and logistics are all key industries in this sphere. Digital superpowers such as connectivityintelligence, and speed can help to solve issues around “hunger.”

The same “personalisation” and “precision” described above for better healthcare services could be applied in the same way to education. Health is vital, but education is the most important investment for a better future. Better educated generations mean more prosperous, more conscious, and more creative futures. Serving SDG goal #4 is probably the best we can do for our future generations.

 

Action 1: Identify your purpose and be clear about it.

Dear reader, whatever industry you are in, whatever level you are operating at, you and your organisation must have a purpose. We are not talking about “maximising profitability”, “growing market shares” or “shareholder value.” A purpose should be inspiring and meaningful, such as “providing the best healthcare service” or “making the best products on earth” or “being the most customer-focused company.”

However, it is not sufficient that only a few executives agree on and know this purpose. Ideally, everybody in the company should know it, internalise it, and even live by it. So, you have to cascade this purpose from the top down and encourage actions from the bottom up. This purpose must be your compass for critical decision making, including corporate change programs, such as digital transformation or sustainability journeys.

 

Action 2: Gear all digital superpowers towards your purpose.

We all agree that data and digital superpowers are accelerating process flows, improving precision, and adding value to customer, business partner, and employee experiences. So, we must embrace them fully, always keeping our purpose on mind. Digital transformation is just a means to an end. The name of the game is “business impact”.

The world is in flux, so is your company. Long-term plans are dead. Long live adaptive enterprises, agile organisations, and fluid management. Digital transformation must be on your agenda. The focus and the balance of your portfolio must reflect your purpose.

 

Action 3: What’s measured gets done. Know your digital score.

Sometimes you get lost. You can’t see the forest for the trees. It’s always wise to have some good friends to talk to from time to time, to get an outside view, independent opinion, and some unbiased advice. Since the very early days of civilisation, kings and emperors have always relied on powerful advisors.

An independent and unbiased measurement of your situation, which we call digital maturity, will show you where you are, how much you have progressed, in which areas you are stronger, and probably most importantly, which of your actions, decisions, investments, and initiatives work to further your purpose, and which not so much.

Champions know their scores. What’s measured gets done. Be among the ones who know so you can make a difference and deliver on your purpose. Good luck.