Information technology is increasing the opportunity and roles for citizen and patients within their own health. Electronic health records are becoming available to all citizens and patients. The knowledge and skills necessary for citizens and patients to benefit from access and contribution to their records is emerging rapidly and guidance is appearing. (RCGP guidance and DH work stream) The patient provider relationship is evolving to reflect this within the United Kingdom and in countries in Europe. Information, personal data, knowledge and understanding are becoming ubiquitous. (Bill Gates New Year) Primary education has become a universal experience. Mobile and information technology is becoming easily available to citizens who are empowered to take actions that impact positively on their own and their family’s lives. These actions are at times in opposition to the messages of commercial advertising that citizens receive through the media. The twentieth century has been described as the century of the self. It was brought in with the early engagement with psychology, global markets, telephony and the motor car. It went out with a sense of uncertainty “all watched over by machines of amazing grace”. (Adam Curtiss – BBC2)
Just as for the extension of human rights and animal rights, the progression of expert autonomous patients has been a long and hard one with obstacles along the way – not least obstacles created by patients themselves. Ivan Illich suggested that doctors had misappropriated patients’ health. To some extent this is true just as Victorian engineers appropriated the right to design and build tunnels, bridges, factories, drains, reservoirs, dams and other engineering projects in the nineteenth century. But it is also true that citizens and patients are happy to accept a passive and fatalistic role in their own and public health leaving what is without doubt their responsibilities to the media, the market and to their highly paid professionals. Professionals will in fact do no more or no less than they are paid for whereas patients and their families and friends are able to do more for themselves than ever before.
Public and environmental health is a consequence of behaviour, nature, markets, culture and technology. The developed World is at the end of one stage of its economic growth and is facing recession, mass migrations, global warming, increasing food costs and population growth worldwide. Markets will be required to adapt as the world’s human population increases by two and a half billion people in the next forty years whilst advertising and the markets encourages all people to expect the levels of lifestyle of the developed world. The planet unfortunately cannot support such lifestyles for all.
Modern lifestyles are producing new problems to deal with. An older population has more illnesses and incapacity to be helped with. There are less young people to help older people. Urban life is causing more mental health problems. Physical inactivity, over consumption, drug and alcohol abuse, obesity, diabetes and related pathologies are market, culture and lifestyle induced. These problems are to some extent the result of the perfect safe, comfortable life that is afforded by cheap and safe transport, central heating, telecommunications and leisure. It seems that all play and no work makes Jack a sick boy. Bodies have evolved to cope with work and stress and require some regular use to remain in shape.
High profit shareholder companies and costly technological medicine are progressing at a time that the WHO (reference) advises responsible authorities to invest in lower cost primary care, health promotion, prevention and public health.
Health management is a biological imperative for all species and for every individual. Each “family’s” day to day life – eating, sleeping, socialising exercising – is driven by biological and cultural behaviour. Lives incorporate healthy and unhealthy behaviours and choices. Secondary health activities occur alongside citizens’ daily health behaviour in modern societies. These include the management of urgent problems, continuing care, preventative care and the promotion of good health and health seeking behaviour. This latter is to reduce the negative effects that environment and lifestyles can have on patients’ lives.
One strand of improved efficiency in service provision worldwide may be the introduction of electronic health records allied to the education of billions of confident, enquiring skilled, patients and carers. Citizens will learn to manage and improve their own health data and to work as partners with health commissioners and providers. They will also become experts in their own and their environment’s health and not leave the environment to the newspapers and businesses but become involved and knowledgeable about their own environment and about local business and development. ( Maslow’s hierarchy of needs)
Health is not just the absence of disease but it is also the fullest expression of each genome within a healthy environment and on a sustainable planet. Passive consumerism is not the fullest expression of the full potential of the genome active participation represents a fitter expression.
The use of the world “global” reflects the similarity of humans worldwide despite differences in languages and creeds. Uniform systems of numeracy, scientific measurement, botany, geography, accountancy and other abstract disciplines have offered solutions to global problems aided by their description, analysis, study and reproducibility. Electronic health records describe, analyse, study and reproduce too especially as their architecture and coding become consistent, universal and ubiquitous.
It seems sensible to address electronic health records issues globally as well as the levels of the 195 separate states since there are such rapid and so many global technological advances that are changing the health IT landscape. There will be national solutions as well as international ones and there are reasons to press forward with both together.
Culture changes invoke resistance, mistakes, misfortunes and opportunities. SMS messaging started 20 years ago and has spread around the world. Mobile phones are doing the same. ITC, shared care pathways and shared electronic records have the potential to integrate self and professional care whilst augmenting traditional medicine. Communication technologies allow the care pathways and care records to be shared between patients, families and lay carers.
At a time when some old people are living longer than they want to, some younger children have no access to health care. There are an additional two billion people to share the planet in the next forty years.
What are changing or need to be changed and where do medical records, intelligence, information, data and data processing fit in with these changes?