21 February 2017 – I flew back to the UK after a few months in Nepal. I decided to return and booked my flights only the day before. Everything happened so fast that I didn’t have enough time to meet all family and relatives. I called my maternal grandmother – affectionately “ama” to me – to tell her that I’m leaving. I will see her very soon on my next visit, I thought.
But she had different ideas. Together with my grandfather, she embarked on a long journey to come and wave me goodbye. She walked down 100s of steep staircases, which leaves fit young people short of breath. Then she took the bus and walked about a mile more before she could finally see me. We spent a quality evening together, and she came to see me off the next day. She made numerous sacrifices for me, but I’m most grateful to her for this trip that she made from the village to Kathmandu.
Fast-forward precisely a year and a week to 28 February 2018; ama was no more.
A few years ago, my paternal grandfather passed away. I was closer to him than I was to my maternal grandmother. But it’s her death that has hit me the hardest. Although she was living with some complications, she was still healthy in her mid-seventies. The way her health deteriorated in such a short time is astonishing – a cruel reminder that our body is extremely fragile. Never did I think on the day that I returned to the UK, that it was the actual “goodbye”, the last goodbye. 21 February 2017; the last time I saw my ama. 21 February 2017; the last time I hugged ama.
Living with chronic conditions
She was living with type 2 diabetes for over two decades, and in recent years, she also had COPD.
Both diabetes and the COPD are chronic diseases that progress slowly over a long period. Chronic diseases are hard to cure with current medical practice. After the turn of the century, the World Health Organisation declared chronic diseases as the health care challenge of the 21st century. We’ve been relatively successful in managing infectious diseases (the other big healthcare concern) thanks to antibiotics, other drugs, vaccines, and advances in medicine. But conventional medicine, including drugs and vaccines, is spectacularly failing when it comes to chronic diseases. As such, chronic conditions, such as heart diseases, diabetes, and dementia, kill over 7 out of 10 people around the world.
Chronic diseases are increasingly common due to our changing lifestyle and longer lives. Modern, urban lifestyles are fast-paced; we’re more stressed and eating more fast food than ever. This is driving the population towards weight-related conditions. In the UK, a staggering 62% of adults are overweight – a major cause of many chronic diseases. It seems like we’re eventually doomed to fall to chronic diseases, and we may well do. However, gigantic leaps in science and technology do give us a glimmer of hope though.
Recent advances in genomics mean that researchers are generating a large amount of human health data. The Human Genome Project that first compiled and determined the DNA sequence of the entire human genome cost nearly USD 3 billion. This sum would be much higher if adjusted for inflation. Genome sequencing is so cheap now; even I could sequence my DNA and send it to space – I kid you not!
And of course, we’re not just generating a vast amount of data. Rapid progression in technology also allows us to analyse and process these large datasets at our disposal. Piecing together these large sets of seemingly nonsensical data, generated by several different studies and researchers, act like pieces of zigsaw puzzle that allows healthcare professionals to see a broader picture of human health. Finally, we’re beginning to make sense of what these data mean and how they’re linked.
The original Human Genomes Project was a costly and remarkably ambitious project involving scientists from several countries around the world. It took nearly 13 years to finish sequencing the first complete human genome. In contrast, the more recent project from the UK Department of Health and Social Care (100,000 Genomes Project) is aiming to sequence 100,000 genomes from 70,000 people. To date, over 60,000 genomes have been sequenced in just five years. These genomes belong to patients with a rare disease, their families, and cancer patients. Combining genomic data with existing medical records will inform appropriate, personalised treatments for patients.
“Precision medicine” looks at the patient’s genetic information, so that health professionals can provide targeted treatments for the patient. The concept of precision medicine has been lingering around for decades, but it’s the recent progress in genomics and data processing that is making it feasible. This approach, combined with the success of other drugs, may eventually help us beat many rare diseases and cancers caused by single genetic mutation. It’s much more challenging to cure conditions that build over an extended period and are caused by multiple roots.
Next grand challenge in health and care
That’s what might happen in the future, but as things currently stand, chronic diseases seem unmanageable. Even if patients survive from these conditions, they live a significantly worse quality of life. It’s not merely a matter of living just for the sake of being alive. We only have to look at the recent story of Australian scientist David Goodall, who decided to end his life voluntarily in Switzerland. He chose death citing a declining ability and poor quality of life in the last couple of years of his life.
Managing chronic diseases is important to maintain the quality of life of patients and prevent disability. If managing one chronic condition is difficult, living with two, three, four or more chronic diseases are much, much more complicated. To make things worse, patients usually carry multiple chronic conditions (or “multimorbidity”) rather than just one condition. That’s the challenge of multimorbidity – it’s making patients less able; it’s putting an extraordinary burden on health and care systems.
I won’t even pretend to understand the multifacet relationship between the burden of multimorbidity, and health and care. I simply don’t, and I’m not sure that anyone does, too. For example, take someone living with hypertension, dementia and diabetes. Their treatment and care needs will be different to someone living with hypertension, dementia and arthritis. Covering all angles of health and care aspects of these patients means the process is almost exponentially more complex compared to individual treatment/care for one condition. And our current health and care systems are ill-equipped to deal with the complexity of multimorbidity. A good step to providing care for these patients may require a national integration of the health and care systems.
However, there is a slight concern – a big concern, actually. Only limited evidence support that integrating the care pathways is useful in addressing the challenges of multimorbidity. Of course, the only way to gather the evidence to support the integrated health and care systems is through research. We need to do more research and evaluate the impact and benefits integrating these systems may bring to patients. The integrated system may not cure diseases or solve the problem of multimorbidity. But the system is much more than about multimorbidity. It would make everyone’s life so much easier while saving money in the longer term. And it would ultimately improve patient satisfaction – and that’s very important.
National integration of systems across the health and care pathway is no small task. It’s not just technically and logically challenging; there is bureaucracy, and big differences at local, regional and national level. Many integration programmes that are successful at local/regional levels are not adopted nationally because national policies do not support them. Therefore, for maximum impact, it may have to be a “top-down approach”.
In 2002, the UK government attempted to take on the challenge and tried to link all data across the National Health Service. Ten long years and £10 billion of taxpayers’ money later, the project failed spectacularly and was subsequently dropped. A damning committee report stated that it was “beyond the capacity of the Department of Health to deliver”. A couple of years later in 2013, the UK government decided to have another go. This time a £3.8 billion Integrated Care Programme is aiming to link all IT systems across the health and care. Let’s hope that it goes better this time around.
Integrating IT systems is only a small step in the grand scheme of things. We still have a monumental task of finding treatments to combat chronic diseases, never mind defeating multiple chronic diseases. When death eventually does come to us, perhaps we won’t die from one disease but from many conditions – as did my grandmother. One a positive note though, there is hope thanks to my favourite thing: science.