Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

Co-creation in health services – a paradigm shift

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Last week I attended the  Etorbizi Forum for Social Health Care Innovation in Bilbao and had the opportunity to listen to Emilio Herrera, CEO of Enterprising Solutions for Health, one of Spain’s best reputed Health Consulting companies.

Emilio Herrera at Etorbizi, Bilbao

Emilio Herrera at Etorbizi, Bilbao

Chronic disease, from cost factor to production driver
Mr. Herrera told the audience that under the current wave of public expenditure cutting not only the health service is suffering, but it is losing its big chance for radical re-thinking and re-shaping. According to Mr. Herrera, the main cost driver of health services are chronic diseases, with 60% of the 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.Life expectancy without dependence
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? It would mean a paradigm shift in health from focusing on life expectancy towards life expectancy without dependence.

A good example of this paradigm shift is Permissia. While I was working at Citilab’s SeniorLab project, we had an exchange with the NIK (Nürnberg Initiative for Communication Economics). This modest acronym is the umbrella of a powerful alliance among health and IT research centers and companies, such as Fraunhofer Institut or Siemens. NIK set up together with the city of Nuremberg and IBM the so called Permissia project.

In the words of Michael Nordschild, head of NIK: “technology cannot prevent us from ageing, but it can prevent us to enter later into dependency. Permissia starts with a simple calculation: a place in residence for elderly has a cost of 200 euro a day for the city. An adapted flat for elderly where technology helps them to live in an independent way has a cost of 100 euro a day. The saving is clear. And the quality of life for the elder is better guaranteed if he can decide over his life.”

Besides of that, take into consideration, that retired people pay their rents fort the flats they inhabit. 10 years of independence men 10 years of sure income. Thus, Pemissia aims to use already existing IBM technologies (lower cost) to allow elder people to live as independent as possible as many years as possible.

Social innovation is the other side of clinical innovation
Technology certainly cannot avoid ageing, but a friendly social environment can. When Mr. Nordschild visited us at SeniorLab in Barcelona he said: “I have never met such a serious attempt to involve older people in the shaping of their future.” In fact, SeniorLab, as a project were elder could design and co-create their own innovation projects, achieved increases of self-esteem of over 80% according to the participants. The building of socially active communities of elders in environments that are not their families is a key condition not only for longer life, but for longer life “without dependency” as Mr. Herrera claimed.

Co-creation in health as new paradigm
Communities no only improve health of elders. They are the corner stone of health improvement in general without  creating new services or cutting existing ones. The UK has shown the path on how to reduce mobility, health impact of diseases and health costs by involving patients in their care. Between 1997 and 2002 there was a reduction of 23% in deaths caused by heart attacks. Much of the merit was due to new treatments, particularly of patients that had suffered already one attach. But a significant part was due to changes in lifestyle habits by millions of people: mainly by giving up smoking.

Campaigns, prevention and education help: this is clear (so, we I wonder why Spain keeps investing only 1,4% of the Health budget in prevention), but the British experience shows that the key for success in dealing with chronic diseases are not only campaigns, but communities of patients that take care in a collaborative way of their own health.

Patient community workshop

Patient community workshop

The case of Crohn – how a minority can co-create a better health service
Many examples from the UK can be read in this very inspiring paper from Design Council. Especially interesting is the case of diabetes. But I want to focus on how patients can co-create better health services at a lower cost even without knowing they are doing so. And I want to choose an illness that is not “sexy” because it is rare and thus does not affect enough people for lobbying. It is also socially not sexy, because due to its symptoms (chronic diarrhea and vomit) it produces rather shame and stigma than pity (like for instance leukemia in kids).In Spain Crohn’s disease  –a severe intestinal inflammation- affects 5,5 people in each 100.000. It is considered a rare disease, but in the past 15 years the number of cases has grown five times. Currently about 65.000 people suffer from Crohn.

Despite this increase in cases, as a rare disease it attracts little research. Furthermore, the fact that Crohn patients are dependent on preventive medicines discourages pharma companies from further research in order to maintain a profitable business.

With little research, no lobby, what could Crohn patients do. They grew to a strong community even before the era of internet, but the information exchange in forums and specific co-created hospital pages has allowed to build a strong relationship between patients and digestive specialists.

In many cases, when Crohn patients enter emergency in a hospital, he knows better what happens with him than the attending doctor. Usually, a lot of precious time is lost in a diagnosis the patient knows already.  According to Marta Ibáñez, former activist at the Madrid Crohn Association, “the key for improvement were the doctors”. The continuous dialogue between patients and doctors persuaded them, that the emergency service for Crohn patients should allow the possibility to be attended by a doctor that knows his case.

Crohn Activist

Crohn Activist

According to Mrs. Ibáñez “they also admitted, that the diseases’ complexity is too much for a sole digestive specialist. So, the service has been improved by the presence of a radiologist, an endoscopist and a pathologist.”

“Now every big hospital as a multidisciplinary Crohn service”, says Marta Ibáñez. It is a service that has been co-created by the dialogue between patient communities and doctors. It is not more expensive, since radiologists and other specialists already work in the hospital. But it saves lots of time and money at the hospital admission and in the treatments, transforming thus chronic disease into a production factor, as Mr. Herrera argued at Etorbizi.

Communities in private health
The apparently modest and not spectacular case of Crohn shows why co-creation with patient communities is a realistic alternative for public and private health services in these times of cost cutting.  This is not only true in public health care, but also in private and may be more commercial medicine. I will soon describe the fertility example.


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.

2 pensamientos en “Co-creation in health services – a paradigm shift

  1. Pingback: How genetic testing can benefit from patient centered strategies | Open Innovation and Co-Creation

  2. Pingback: ValueCreation nce and New Health Foundation sign startegic alliance to promote a new paradigm in healthcare | Open Innovation and Co-Creation


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