Views & Reviews Personal View

Patients must have control of their medical records

BMJ 2012; 345 doi: http://dx.doi.org/10.1136/bmj.e5575 (Published 21 August 2012) Cite this as: BMJ 2012;345:e5575
  1. Mohammad Al-Ubaydli, founder and chief executive, Patients Know Best, Cambridge CB1 8NR
  1. mohammad{at}patientsknowbest.com

Imagine an elderly patient with heart disease, arthritis, and a history of depression who needs social care at home. These are the patients who generate most of the work and cost in today’s developed world health systems, and usually their care is fragmented. Our hypothetical patient sees two specialist nurses as well as different general practitioners at her local practice. She sees three sets of specialists, two of them at different hospitals, and she is to have a cataract removed at a third hospital. A carer comes every day, and she depends heavily on her three sons who share her care and live in different parts of the country.

Everybody accepts that this patient will have better care, and that costs to the health system will be lower, if her care can be integrated. But how can that be done? Well, one way—and perhaps the only way—is through the patient having electronic records that she controls herself: a personal health record.

A personal health record is different from an electronic patient record in that the patient controls it rather than an institution. The beauty of this is that our hypothetical patient can share the record with whomever she wants, including her carer and her sons if she so chooses. By contrast, an electronic health record is designed for employees of an institution to work together. It is logistically, technically, and legally difficult to connect such records.

The number of connections in a network necessary for integrated care goes up exponentially if the connections are institution to institution, but only linearly if they go through the patient (a hub). In other words, only the latter approach can cope with the networks of care of modern medicine. Furthermore, each institution may have its own system, incompatible with others. Clinicians will rightly hesitate to share data with non-clinical staff like social workers, teachers, charities, and relatives, but these parties may be important for the patient’s health. There are also formidable legal difficulties with institutions sharing data about patients. Patients, by contrast, can quickly and usefully consent for data sharing if they are in control. Our hypothetical patient may well want her sons to help her make decisions about her health, and if she develops dementia and the sons have power of attorney then they can seamlessly take over control of her records and care.

Just as everybody is for integrated systems, so every clinician and health system wants their care to be patient centred—but it is hard to see how care can truly be patient centred when patients’ records are scattered and not under their control.

Building integrated systems with patients controlling their records is not just a theoretical dream. It is happening now in the NHS. As a doctor with a lifelong medical condition I have always believed passionately that the best care results from patients not only sharing their care with clinicians and others but also having ultimate control. That’s why I founded Patients Know Best, a business that uses information technology to improve the relationship between patients and clinicians.

One of our first projects has been with the gastroenterology department at Great Ormond Street Hospital. The department looks after children throughout the country with intestinal failure. These children need parenteral feeding, and their care is highly complex and involves many parties. The parents of the children and, as they get older, the children themselves control the records and share them with local hospitals, general practitioners, community nurses, home healthcare companies, teachers, and sometimes social workers. It’s no accident that patient controlled records begin with such complex patients because, as Susan Hill, consultant gastroenterologist at Great Ormond Street, says, it was becoming impossible to cope with paper records. One benefit has been that as the children become adults and their care transfers to adult specialist centres it is easy to share the records. Hill also believes that teenagers who control their own records are less likely to rebel against their treatment, because they can’t resist electronic communication.

Some patients—for example, pregnant women—have long controlled their paper records, and patients have a legal right to access their records, but many clinicians and institutions are understandably nervous about moving to electronic records held by patients. It seems inevitable that patients will eventually control their own records as they control much else in their lives, but three moves could hasten the process and encourage integration of systems.

Firstly, the government might require all institutions providing care to provide its patients with a machine readable copy of their data. Machine readable means that it can be stored in patient controlled record software outside of the institution’s control. Secondly, clinicians must learn, with support, how to write records with the expectation that patients will read every word. Social workers went through this change decades ago. Thirdly, the law for machine readable records should exclude written notes up to two years after the passing of the law. These notes will remain legally accessible as they are now, but the mass availability of these records frightens clinicians because they wrote the notes under different rules.

Ultimately, all of society, including clinicians, will win from the transition to patient controlled records with its resulting integration, but the biggest winners will be those patients, such as our hypothetical patient, with complex conditions.

Notes

Cite this as: BMJ 2012;345:e5575

Footnotes

  • Feature, doi:10.1136/bmj.e4905
  • Competing interests: I am a founder, employee, and shareholder at Patients Know Best, a company that sells patient controlled medical records software.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.