New healthcare vision for people diagnosed with cancer: including identity development
The number of people who survive cancer in Europe and the United States is increasing (DeSantis et al., 2014) (see figure). Although there is a decrease in incidence for example in the United States, there is also an increasing amount of elderly who receive a diagnosis and an improved treatment.
Considering this population needs psychosocial support to restart their life, there is a growing need for psychosocial support. The need for psychosocial care is especially high for young people with cancer, considering the developmental phase they reside in. Their needs may remain 10 to 20 years after treatment.
To maintain financial sustainability while providing care for this people there is an opportunity for new forms of care outside the hospital. This type of care could take advantage of resources available in the community.
The potential of new care
Young people who are diagnosed with cancer express the need to be better prepared for what is coming. More information is needed for example about relationships, sex and fertility. These needs find their origin in a bigger identity development, which is taking place at that moment in the lives of young people with cancer. It is therefore important that a new vision of healthcare for people diagnosed with cancer includes identity development.
Identity is strongly related to meaning. Frequently practical questions arise about “how to go back to normal life”. How to go back to having a relationship, have sex, go to school, work, do sports and party? Even though these questions look like practical questions at first sight, they are actually showing the tip of an iceberg. These questions have deep roots in the process of developing a new identity and a new life. They relate to questions as: Who am I because of this experience? What does this mean for me? How do I continue with my life after this?
Many people develop a new story about themselves and creativity plays a very important role here. In Italy for example, young people with cancer developed with the support of dr. Andrea Ferrari (see underneath) a song to develop their story.
New model, new vocabulary
New care models, which take into account identity development could play a positive role for people who’s diagnosis changes their lives on all levels. The model of positive health (https://iph.nl/) for example includes meaning as an integral part of health. Also the New England Journal of Medicine is opening a dialogue to bridge mental, psychological and social aspects in healthcare in a new catalyst event on the 25th of January.
Identity development is a dynamic process, which differs for every person. Therefore there is no set intervention, which you could prepare beforehand for patients, at a certain moment in their care path.
New terms are also needed to refer to a group of people who has been intensively ill and afterwards is declared healthy again (see figure). Technically speaking being health again is declared as “remission free”, however this mainly refers to medical health and not to psychosocial or sexual health. How is someone called who has sustained damage on the body because of cancer treatment, but who is psychologically healthy?
Recently the term survivor is now also used to refer to people who are healthy again. However, how healthy are people, who are physically healthy, but are still looking for their identity and trying to find their way in life?
Is it desirable to provide a positive healthcare with every healthy person after treatment? Given that certain elements as meaning are challenges for all people, we should probably take into account that we are redefining personal development into health development. We should avoid to turn to classical medical care though to treat these problems.
Is there a point in the care path, where health development stops and we start to talk about personal development? If we assume that care provides support and the patient receives care in a more passive way, personal development would require a more active role of the patient. If a patient is actively taking care of his health, is it healthcare or personal development? How should these different forms of support be called?
To develop your identity, one needs to develop knowledge about yourself. “Know thyself” is an ancient Greek aforisme that helped people to stay healthy. One could state that to develop self knowledge is an ancient Greek philosophical intervention. In the field of philosophy the field of knowledge development is called epistemology.
Today, we have a whole new array of possibilities to process information through technological advancements. This technology also shapes our identity. People for instance develop a story about their life in which they play the main protagonist on Snapchat, Facebook, LinkedIn, Twitter and Periscope. This new technology could also support people in a sustainable way.
The American organisation Hopelab developed for instance a chatbot, that is a digital conversation partner, for young people with cancer to provide psychosocial support. The organisation Stupid Cancer also developed a social app to connect people who have cancer with each other so they can support each other.
These digital applications could provide mobile support outside of the hospital on a long term basis. This would also have the advantage that this is less expensive, compared to in-hospital care.
Digital support for identity
The World Health Organisation defines eHealth as the use of information technology for care. A reference is made to mHealth, Telemedicine, eLearning, electronic medical files, big data and social media.
eHealth is a part of large trend in our society in which digital technology is being adored. For this reason it is important to reflect philosophical on the use of digital applications in healthcare. What is the impact of digital forms on our identity such as for instance a high volume of social interaction? Which values do we want to foster in care on the basis of artificial intelligence?
‘The new clothes of the emperor’ is a fairytale of Hans Christian Anderson about two imposters, who lure the emperor into believing that they sell the most beautiful clothes. In reality they do not sell any product. The claim that only the dum people cannot see the fabric and the smart people can see a beautiful fabric. No one, including his wisest advisors, dares to say that they do not see the clothes, because otherwise they would have to admit they are stupid. When the emperor is showing his clothes on a parade and no one dares to say anything, finally a child is saying: “Look, the emperor is walking around in his underwear, haha!”
The belief in digital solutions on the basis of data is often very promising and seductive. Just like in the story of the emperor, a blind belief can be very embarrassing consequence, when one realises one was entirely wrong. The consequences can be much harder when your health is at stake.
Dataism as explained by prof. Yuval Noah Harari in his book Homo Deus is the belief that the universe exists out of streams of data and that the value of everything is determined by its contribution to data processing.
Dataism can determine many things in our lives including how we use digital technology in healthcare. We may believe that applications as “23andme”, which analyse our DNA, may not only explain our health risks and our ancient ancestors, but also provide meaning to our lives.
Dataism as a belief in data is not new. It did recently get much more traction in society and also in the scientific community due to recent breakthroughs about how we deal with data.
The right perspective on digital development is crucial
Big data finds one of its origins as a term in scientific organisations where a data set was of such proportion that it was not easy to manage. Even though, this may seem like small scale scientific problem, it does have a much larger societal relevance now.
The amount of data has grown enormously and the data processing techniques have also improved. These large amounts of data also include today much data about your personal life. This data could be processed and analysed in a way to predict your behaviour.
In the area of data processing the evolution is already going on for a long time. Prof. David Deutsch writes in his book The Beginning of Infinity that already since ancient times, knowledge was made abstract. This was done for example in a numerical system with abstract concepts like numbers, which resembles a modern form of data.
Since arithmetic systems have been developed, they were used as techniques to process abstract concepts as numbers to develop knowledge more swiftly. This process did have a concrete physical border. The calculation depended on the length of paper you had at hand and the limited time you had as a human to make the calculation.
This process has entirely changed since the automatisation of arithmetics in the last hundred years by using mechanical arithmetic machines and recently by using electronic arithmetic machines (see figure). In this development Alan Turing played a fundamental role amongst others. These machines suddenly have an infinite reach with less physical borders.
These machines are able to make calculations much faster, without involving people (the timespan of a human life becomes irrelevant), the also have much more memory (the length of paper becomes incomparably small). The evolution of these machines as computers, quantum computers and neural network is happening very fast over the last few decades.
Calculations and logical syllogisms are suddenly automatically performed at an incredible rate with our personal data from daily life, which can have a large impact. A certain process of automatised learning via a very fast repetition of logical reasoning is suddenly becoming a reality because of these machines. Scientists showed in 2017, that by showing a machine in a short amount of time a billion pictures of different skin cells with some explanation, the machine could detect melanoma better. These calculations can therefore be used to diagnose a patient. This process is called machine learning.
Big data is therefore an old tem referring to a new evolution of information processing which is changing rapidly. This evolution is changing at such a high pace that people believe that machines are therefore developing a new intelligence. This is called artificial intelligence.
Even though terms as big data, machine learning, neural networks and artificial intelligence are all different, they are often used as trend words to refer to the rapid evolution of information processing.
Big data analyses of data of a person on the basis of a new healthcare model such as positive health could support people in their care and personal development. It is important to understand that the engine of of digital systems is much more powerful now and therefore much more is also possible. To steer this evolution in the right direction for improved care I believe it has to be designed and used keeping this perspective in mind. To develop this perspective in the mind of designers and users it needs to be supported by education.
Education for digital identity development
1. Prevent a dogmatic view on digital support
The danger of blind trust on a source of all truth like digital solutions is that it changes in dogmatism. Dogmatism slows down or even stops knowledge development completely. For instance all knowledge development about yourself my stop.
When looking at history we know that dogmatism only had bad influence. Take for instance Christianity. Many scientists, philosophers and different minded people have been sentenced to death for their beliefs, which differed from the dogma. Giordano Bruno (in figure below) for instance who was continuing the path of Galileo has been sentenced to death at the stake because he did not respect the truths of the christian doctrine about earth and its planets.
In that way it is crucial to always be able to highlight the underlying theoretical assumptions of data and dataism. Concretely this means that new digital interventions, which help develop identities have to be developed in a critical way.
That critical approach is a skill that requires a certain culture. A culture with institutes, which supports the scientific method such as universities play an important role here.
From a philosophical perspective this position joins the principle of fallibilism of the philosopher Karl Popper. If we live in a culture where assumption, such as the christian doctrines, can be questioned, than we are making progress. This philosophy has gained momentum during the enlightenment period. Unfortunately it didn’t stay that way, describes prof. David Deutsch, as a form of counter balance to dogmatic beliefs people started to focus very hard on what could be observed in reality.
This idea is still very strongly present among science known as the field of empiricism. Meaning that, only what we can perceive, brings forth scientific insights. In this way the goal of more theoretical sciences is entirely reduced to supporting the observations of empirical sciences.
Empiricism contrasts to what Popper believed to be the most fruitful course. He claims that all information is value-laden. Every observation is in this sense “objectively observed” even though this objectivity is based on theory with certain assumptions.
It is important to realise that also the data on which dadaism is found often is empirical data and therefore receives a very strong status in our society. It is therefore important to critically reflect and develop the theory in congruence with the data that is used to develop digital solutions.
All assumptions including the scientific method have to be discussed. Only in this way we create a culture that will make progress, otherwise we necessarily degrade in a certain form dogmatism.
Critical education about digital technology in new forms of healthcare can prevent a the development of a dogmatic vision. This education is important both for developers and users of digital technology.
2. Education for developers
Developers are challenged to predict the societal impact of certain technologies as artificial intelligence. To unpack the technology and see what it actually does is very complex.
Developers of smart data algorithms do not know why a certain result has been generated. These algorithms are considered to be a “black box”. For this purpose the European Union recently also developed General data protection regulations, which will be implemented in May 2018. This will give the right to consumers to challenge the decision of an algorithm.
Currently there are two side effects visible of blind implementation of eHealth in our society:
Deep values as trust and social code of interaction change invisibly by new transactions.
Data is considered to be practical wisdom (see figure). However, both users and healthcare professionals are being overwhelmed by eHealth systems, which only contain knowledge at the data level. This causes an extra time burden to translate this into information and increases the risk for burnout.
3. Education for users
People have become used to the promises of the technology, people forget they believe in them. In this way people no longer have a critical view on the use of technology. Once you are at the stage of using the technology on a habitual basis, several refined mechanisms are used to draw your attention.
This techniques are based on careful analyses of our behaviour by algorithms. Insights about our human need for affection is often misused and cognitive processes as cognitive consonance are often taken advantage from. In addition, the system is propelled by an economy in which every second of the attention of the user provides more money to the provider of the application.
The interaction with digital apps is partly being influenced by our environment and the app, but also partly by ourselves. In our digital environment an increasing amount of smart techniques as described by Tristan Harris is used to capture our attention for several hours without a blink.
Facebook for instance sends you a message, while you are reading this text about a friend. The message was carefully crafted to only reveal what draws your attention “a friend is giving you attention”, in order to actually see what attention this friend is giving you, you need to open the application. This means however that suddenly you will be exposed with many more attention messages and before you know it, you spend another twenty minutes on the application. Only later on we realised we may have wanted to spend that time differently.
In addition, our own choices about the development of knowledge have also changed. Often we trust what een app is telling us more than what is written on paper or what another person is telling us. For example, Google maps helps us find our way on a daily basis. We are not comparing the route with a paper maps or we are not asking someone else, even though this person may have taken this route for twenty years.
In summary, the data driven technology has become very demanding of our time and is simultaneously receiving a very high credibility by its users. It is therefore especially important when using very personal data, such as health data in eHealth applications that we educate ourselves in a critical way about the use of these applications. This way we can become aware of the trust we have in this technology and this may prevent harm caused by digital health addiction.
New vision cancer care
The number of people who is diagnosed with a chronic illness will increase. There is also a large need for financial sustainable solutions. A new care model that includes the development of the identity of people is important to bridge the world of inpatient and outpatient care. People who are diagnosed with cancer can therefore be supported to restart their life in a financially viable way in the long term beyond traditional hospital care.
New terms are needed to describe these people and the support they receive. eHealth can play an important role as a new intervention if both developers and users are being educated in a critical way.
(Note to the reader: I am writing this text as a “vision text”, however I see this text as a practical philosophy exercise to align my thoughts. In this text I dabble with items I am highly interested in but also fear as they emerge in my path. This text is in this way a form of “meditation” (as ancient philosopher Marcus Aurelius Meditation's text format) to help me find my way. Thanks to insights of friends I made revisions to be as constructive as possible in the hope to inspire readers and provide helpful insights.)