Patient Centricity Empowering patients with their data

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The longstanding issue with health records is that they are often distributed in nature, posing challenges for patients and professionals alike to share. The healthcare landscape is complex, and people are increasingly mobile, with data often not in the right place at the right time. This is detrimental to both patients and the health system.

Patient Centricity is the idea that every patient should be at the center of their records with greater agency, ideally owning and controlling a copy. After all, in the fragmented world of health records, only patients truly know where all their information is and have the right to aggregate and share it as they see fit.

Note that in some circles, "patient centricity" has been co-opted and lost its true intent of patient empowerment, especially the idea that patients should be the ones who own and control their care.

There are clear benefits to returning data to patients, and many objections and myths have already been addressed, not least by the hugely successful US Open Notes Program. It has been demonstrated that patients better understand their condition/care, and they have even addressed more sensitive areas such as mental health and the immediate return of records to patients.

Achieving this aim can be perceived as challenging; however, patients already have legal rights to access their data, and this is the first and simplest step to take—giving data back to individuals, which can be facilitated through apps, portals, etc. Ultimately, it is the underlying APIs that liberate the data and catalyze innovation.

It’s interesting to note that before the digitization of medical records, patients were often given their notes. Indeed, in some cases, this practice lived on, for example, with maternity records and some child health records, due to the interdisciplinary nature of their care pathways and the lack of effective information sharing. This is even more prevalent in countries with less developed health systems or without technical infrastructure, as the only way to move records around is for the patient to carry them.

While there are many benefits and opportunities with the digitization of records, in some respects, they have been a retrograde step, particularly for patients who value access to their records. While there has been significant progress in several areas, we are a long way from a complete record being available at the point of care, perhaps because we overlook the obvious and immediate solutions.

Funding Opportunities

Given the government appetite to expand the UK data economy and unmet need in health, there exists a great deal of investment and grants in this area. Notably the UKRI

Example projects and experience

Over 20 years experience in and around health technology gained through various positions and projects, including 7 years in the NHS. Relevant examples include :

  • eRedbook PHR (Personal Child Health Record) with Microsoft on HealthVault
  • digi.me personal data platform
  • EU Horizon 2020 My Health My Data Data Exchange
  • Working with pharma to explore the role of patient data in research
  • Supporting industry innovators with product development

Do you need support?

If you have a particular need within your team please feel free to reach out and discuss your requirements. Support can be provided in a number of areas including :

  • Shaping, strategy, plans and business development
  • Guidance and advice for project/product development
  • Input to bid development
  • Project / product delivery

Flexible arrangements to meet your specific needs. Choose from single-day(s), block draw down arrangements, or regular monthly commitment.

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