Interim Insights – Future of Patient Data
Now that we have completed the first four of our global discussions on the future of patient data, it is clear that this topic is complex, interconnected and can viewed through many different lenses – including geographic and sectoral. Having begun in Dubai, expert workshops in Johannesburg, Oslo and Brussels have all provided informed perspectives on some of the primary drivers of change for the next decade and delved in depth into some of those that have the potential for greatest impact. As we prepare for the next workshop in Singapore tomorrow and then move on to Sydney and Mumbai, this is a high-level summary of the ten main themes to emerge so far:
- Integration – With evident infrastructure challenges, multiple data gaps within existing healthcare systems and a plethora of new sources of personal, social and clinical information all coming to the fore, a key issue is seen to be how best to combine data sets, ensure interoperability and better use of good quality ‘clean’ data.
- Control – The question of ownership of health data is clearly in flux and driving debates around access vs. use, but the idea that patients will have increasing control of their health data is a consistent theme. Whether they will themselves become custodians, or rely on personal data stores to act as interfaces, will depend on culture, regulation and need.
- Security – As the potential for more sensitive health data being shared between varied organizations and platforms, the issue of security of personal information is high on many agendas. As anonymized and aggregated data is more easily re-linked, questions are being raised around centralized vs. decentralized data and the impact of localization.
- Personalization – With a greater drive for providers to ‘get closer’ to the patient, understand more about their lifestyles, and so tailor, diagnosis, care and treatment, the prospect of more individualized medicine is growing. Add on the growth of genetic profiling, gene editing and embedded sensors and the opportunity for n=1 healthcare is clearly accelerating. But will it be for all and will key behaviours change?
- Access – Although advances for the rich and the mostly well are being rolled out, there is concern for those being left behind. While some hope that health inequality can be reduced with more and better data, others see a widening digital divide especially in public health systems. Many are concerned that we will not successfully reach the 5% that incur 50% of Western sick-care costs.
- Standards – With the shift to outcome based health systems well underway, many are calling for greater standardization of measures. With regulators in many regions seen to be behind the curve, issues around compliance, consent and privacy are increasingly public concerns. How different countries deal with these seems as much political and technological.
- Efficiency – Although there are great expectations around new technologies, some are, for example, confusing the potential of machine learning, deep learning and true artificial intelligence. Initial benefits may be greatest in enabling more efficient diagnosis and better prediction but major improvements in treatment are also expected to follow.
- Skills – While some, but not all, of the next generation of healthcare professionals are more comfortable with the potential for digital transformation, many in the old guard lack the necessary skills. Whether we need to learn, unlearn and relearn new skills or if the systems evolve fast enough to provide seamless support for doctors is a big debate.
- Trust – A key issue across all discussions to date, many are concerned about the need to build trust both between payers, providers and patients and also with new entrants and platforms. Concern about ulterior motives on the use of data is high and so being clear about the trust relationship between individuals and the varied health systems is a major barrier to overcome.
- New Models – Lastly, many existing systems need to be reconfigured and new approaches introduced that are more aligned around greater data use. The answers may come from unexpected places. Implicit in this is clarity on the access and use of data and its value – what will be part of the public commons and what is open for commercial purposes.
As we move forward, we will provide a more detailed overview of key insights and their interconnections in early December – ahead of the London event. This will then be built on and evolved into our final report in the New Year, after the completion of three other planned discussions in Toronto, Boston and Frankfurt. As ever, we thank all those who have contributed to this project both in the workshops and directly via email, twitter and linked-in. We encourage more feedback to help build a more informed global view of how the important field of patient data access and use will evolve.