Preface
- Mohammad Al-Ubaydli
- Federica Andreoni
In 2009 a political controversy surprised politicians who thought they were making a sensible suggestion. “Patients would be encouraged to store their medical records with companies like Google and Microsoft under plans being drawn up by the Conservatives.” Using successful technology efforts of private companies seemed sensible following the UK government’s previous failed centralised effort with medical records. But the public backlash was immediate and sustained.
The government quickly shelved the suggestion. 15 years later, Labour government’s Wes Streeting is using the same language about a single record for the citizen for life (The Guardian 2024). His new name is for “patient passport” and it would be integrated into the government-owned NHS App. But he is not detailing how to achieve this.
We see this dilemma facing every country. They need this technology, their citizens need this technology, and everyone need it done right, right now. But governments do not know how to build and they do not know how to buy.
We wrote this book to get governments past thinking and into acting. Most know why, few know what, far too few know how. We wanted to document the experience of every country to advance every nation. Every citizen needs this.
Why personal health records?
In England, 1 in 17 people has a rare disease (Donaldson, 2010): most of these people know more about their situation than most of the doctors looking after them. 25-50% of patients at hospitals are from outside the region (Patients Know Best research 2024): the hospital does not have access to the records from outside the region. Long-term conditions account for about 70% of the money the country spends on health and social care (Nuffield Trust, 2024): what these patients do matters more than what their doctors do.
These three are the drivers for a health record that is organised around the person. A personal health record. This recognises the patient’s knowledge, starting with rare disease patients. The record moves with the person, as expensive patients travel long distances to hospitals. And daily data from the person’s body and actions determine health and death more than a hospital’s episodic data.
Why governments?
Governments account for the majority of health care spending in the majority of countries. In the UK, the publicly owned National Health Service has long dominated accounting for 80% of health care spending. Government spending still dominates countries with majority private providers. Even in the USA, public health spending was 52% pre-Covid in 2019 (up from 44% in 2000) (World Bank, 2024). The trend of increasing government funding accelerated during Covid.
Governments are the insurer of last resort. They are the only ones taking on actuarial risk, socialising the risk of health care costs. Governments - not private insurers - are the ones covering rare diseases, long distances and chronic conditions.
Therefore it is governments who are leading on personal health records. Private providers build organisational portals that lock in the patient to lock in the profits. Private payers' investments in portals stop when the member changes payer, and the member knows this, so they do not engage. Only the government has a financial incentive, at scale, over decades, to organise data around a citizen’s lifetime.
Governments often start with government-owned providers: the Department of Veterans Affairs in the USA went first and farthest in personal health records while private providers focused on organisational portals. Across Europe and the Gulf, public providers carried out data sharing instructions first and faithfully. In India, public providers are the sleeping giant that will likely transform the percentage of data shared in structured coded format rather than the current scanned unstructured uncoded PDFs of private providers.
Why now?
No government can deliver universal coverage in the 21st century without personal health records. As people with rare, distant and complex situations live longer, their care is unaffordable if professionals do everything. Not every patient can do everything, but many can do much, and they must be allowed to.
Yet every government is expected to contribute more for universal coverage.
The share of government contribution is highest in the highest income countries. As countries' income rises their government share rises. And high income countries' government share has risen with time.
Covid cemented this trend.
Therefore every government must find a solution for personal health records for its population.
Why the book?
Yet governments do not know how to solve this problem. They lack the skills to build, and they lack the trust to buy. They understand personal health records are critical infrastructure for the 21st century so are fearful of making mistakes. Many build limited, idiosyncratic national solutions.
This is a good starting point. It is a long way from the destination. They start with transparency: a promise by the government to its citizens that data about the person will be visible to the person.
The private sector delivers engagement: driven by competition, a focus on usability means more people look at more data more quickly.
Activation is the goal: a citizen who understands what is happening and knows what to do about it. It will take a global competitive industry of solutions to deliver this, just as the internet delivered two decades ago in other industries.
The goal of this book is to raise the game of governments. By documenting the efforts of different countries, officials can learn from each other more quickly. It is also to tilt trust as some governments have worked with the private sector and some of those efforts have worked. We all must deliver activated citizens. There is no time to lose: the demands of ageing, obesity and workforce are crushing health systems; meanwhile the advances in sensors and AI are astonishing.
This book is to seize the opportunity and dodge the disaster for health of humankind.
Bibliography
Donaldson, S.L. (2010) Preface. In: Department of Health, 2009 annual report of the Chief Medical Officer. Available at: http://www.sthc.co.uk/Documents/CMO_Report_2009.pdf (Accessed: 26 August 2024).
The Guardian 2009: Patients should store their health records with Google or Microsoft, says David Cameron (Accessed 29 October 2024).
The Guardian 2024: Wes Streeting unveils plans for ‘patient passports’ to hold all medical records (Accessed 29 October 2024).
Nuffield Trust (2024) Care and support for long term conditions. Available at: Care and support for long term conditions (Accessed: 26 August 2024).
Office of National Statistics 2021: Healthcare expenditure, UK Health Accounts - Office for National Statistics (Accessed 29 October 2024).
World Bank (2024) Global Health Expenditure database. Available at: World Bank Open Data (Accessed: 26 August 2024).
World Health Organization (2023): Global spending on health: coping with the pandemic. Available at: https://iris.who.int/bitstream/handle/10665/375855/9789240086746-eng.pdf?sequence=1 (Accessed 29 October 2024).