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Archive for the ‘Patient Rights’ Category

Recently talked to a friend who had an ultrasound scan of their ovaries. The ultrasonographer was quite cagey and left my friend feeling rather anxious about the results. She is at that age where fear of ovarian cancer is real and meaningful and appropriate. She is waiting to hear the results; a wait that is made worse by the fact that the hotline number is always busy. It made me realise that an EMR would make a huge difference to a patient if it allowed them to seek second opinions and circumvent the specific practices of the UK health system. As EMR and EHR programmes are being rolled out, it will be fascinating to see whether they are used to reduce healthcare costs, empower patients and stimulate innovation in healthcare or whether as is most likely they will simply be used to reduce costs and retain the hegemony of medical professionals. The promise of Electronic Medical Records is of a patient record that enables patients to understand a great deal more about both their health and any illnesses they experience and to improve the quality of their lives thereby, it opens an exciting opportunity for community building and sharing health experiences especially for afflictions that impact the social capacity of the patient, it enables universities to undertake extraordinary statistical research into epidemiology and it provides the platform for patients to “own” their own health rather than the contemporary disease of outsourcing it to doctors and numerous alternative quacks.

Esther Dyson’s comment piece in the FT is just the latest in the line of voices calling for and predicting the inevitability of change in the structure of the healthcare system.

see Financial Times: http://www.ft.com/cms/s/0/adfbf490-876e-11de-9280-00144feabdc0.html?nclick_check=1

Bundled up under the heading of Health 2.0, the paradigm predicts that patients will become the decision makers in future healthcare interactions and most importantly, patients will own their own health data, rather than it being owned and contained by healthcare institutions and professionals.

There are two contending views of the digitisation of health records. The traditional one contends that patients are literally “not fit” to manage their health data – this is the view of the health industry. There is a countering perspective that patients should have the absolute right to manage and decide to whom they disclose this information.

Technically, this is a supremely important question. Will we have networked, open protocol data standards for patients or will we continue to build as are in the UK, large centralised systems that are closed to the majority and rely on expensive, bespoke and closed standards. Bespoke systems that don’t even work.

Patients want and and should be trusted to make their own choices. They are choosing to travel for surgery. They are electing to have procedures such as non-essential cosmetic surgery.

Furthermore, this trajectory will profoundly impact how global healthcare proceeds. National standards bodies will need to be superseded by global standards that provide globetrotting patients with the advice and information they need for informed decisions.

In research terms, imagine! Massive anonymised data of healthcare trends, the ability f0r patients to share and connect with fellow sufferers of rare ailments and the ability for pharma companies and biotech companies to access massive pools for trials and long term studies.

Amazing! All that stands in the way is 100 years of tradition and an ingrained sense among doctors that they are right and we patients are wrong!