Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

What do we know about patients – and what don’t we know?

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A recent post by Tim Kilpatrick in MedCity News dealt with the cost of not taking into account real patient needs. As an example he quotes the case of a 90 year old patient admitted into the hospital with a congestive health failure. The article writes that the US healthcare system “will pay for the ambulance and $50,000 to stabilize her. It will not pay for a $200 window air conditioner, which is all she needs to stay in her home and out of the hospital.” Further the article states that “the top 5% of the United States population spends 50% of the $2.8 trillion dollars of healthcare costs or $88,000 per year. 66% of the top 5% list will not be on the list next year as their conditions will stabilize or they will be deceased.

Patient knowledge is essential for healthcare effectiveness

Patient knowledge is essential for healthcare effectiveness

The situation is similar in Europe, with a public instead of a private healthcare system. According to Dr Emilio Herrera, from the New Health Foundation, chronicity means 60% of the public healthcare spending. By now, reforms have stressed cost cutting according to an input-output scheme (so much money spent vs. so many cases seen by day), but they have failed to make from chronic disease an element of production. This is clearly seen in the fact, that despite massive cost cuttings, prevention is still 1,4% of health spending. What would an increase of spending in prevention mean for the overall healthcare budget?

In the American and the European case what is lacking is direct knowledge about the patients’ context. Something only seen in TV fiction, when Dr House and assistants for their way in patients’ homes and work as detectives through their family and social relations.

Electronic medical records have lots of information, but lack knowledge
How does it come that with all the money invested in electronic medical records, ERP systems, big data and other IT solutions we have so few information about patients. Whenever I had to manage customization or development of IT systems in the fertility sector I have been confronted with their rigidity. There are lots of medical, pharmacological and billing data. Also all the necessary information to go through the treatment an – how not- Marketing relevant data. Of course al systems include anamnesis (the patients’ medical history and records). But there is no single data about their context and all other points of patient intelligence: environment, psychosocial information or care co-ordination.

Electronic Medical Records are rich in data, but poor in knowledge

Electronic Medical Records are rich in data, but poor in knowledge

And this although IVF-SPAIN is a patient centred clinic that includes patient experience in IT System design (see last post on patient driven IT design). Why does this happen? Because historically the medical paradigm dominated in clinical institutions: see diseases, syndromes, tumours, viruses or bacteria instead of people with diseases. There has been a good reason for this mental scheme: without the disease centred paradigm medicine would have not experienced the immense progress it did during the 20th century. Yet, more and more evidence shows that healing is also related to patient centeredness and that and improved patient experience has an impact on clinical results. There is also growing evidence that patient centred care and patient empowerment have also a strong impact in cost reduction (see for example this systematic review on links between patient experience and clinical safety).

For this reason, face to face interactions are key for healthcare effectiveness. A medical organization that does not take advantage of its thousands of yearly patient conversations loses possibly 60% of improvement chances. In a forthcoming post we will see how to use face to face interactions to set up and feed a patient intelligence system that allows us to work more accurately and more efficiently from both a patient and a clinical perspective.


Autor: Carlos Bezos Daleske

Siento curiosidad por todo lo relacionado con personas y organizaciones, especialmente en salud. Me gusta trabajar con personas y con su capacidad de innovación y co-creación. I feel very curious about everything related to people and organizations, especially in healthcare. I enjoy working with people and their ability to innovate and co-create.

Un pensamiento en “What do we know about patients – and what don’t we know?

  1. Pingback: Patient intelligence versus electronic medical records | Open Innovation and Co-Creation in Health


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