Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing

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How to build a patient intelligence system

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Professor Horcajadas, the well know specialist for reproductive genetics with 45 international papers on the issue, compares the difference between traditional genetic techniques and sequencing with fishing. “Using sequencing is like having an industrial fishing net, while traditional techniques are like using a fishing rod”. But he warns, that “the quality of data in the depth of analysis is better with classical techniques. Classical techniques give lots of knowledge, while sequencing provides lots of data”. Diapositiva1

The same is true for big data and qualitative patient research. The first provides us with amounts of information we never had, but as we saw in our last post, they give us little knowledge on patients. This is why we pledged for gathering more knowledge from face to face interactions, using for instance upstream medicine techniques, as a way to feed a meaningful patient intelligence system that allows us to provide more effective treatments and save huge amounts of money.

What is patient intelligence made off?
If you want to design a patient intelligence system for your healthcare organisation, you need at least 5 categories. 3 of them are classical medical categories and 2 context or upstream categories.

CLINICAL
Clinical conditions are of course the most important information. There are some standard conditions and there are others that are typical of cardiopathies, oncology, etc. For instance in fertility, relevant clinical information would be about endometrium or sperm quality. Nevertheless, often there are several pathologies associated with a patient.

Mental health: it is often not recorded and its relationship with physical health is well known, but not recorded.

Functional conditions: if patients cannot perform some everyday activities (eating, bathing, dressing, etc.) or they have disabilities, even minor ones.

GENOMICS
There are more and more genetic tests as well as information that can be gathered from specific sequencing that helps to make personal treatments, like the endometrial receptivity tests for pregnancy or gene therapies. Other ‘omics’ can be important too, like microbiome, metabolomics or proteomics. Many physicians still do not understand the implications of ‘omics’ in health.

CARE
Care monitoring and protocols and co-ordination among caregivers should be registered, as much as treatment and medication plans and also other plans, like starting exercise or giving up smoking.

Of course, all other points of the patient intelligence system should be integrated into  decision making algorithms for the care plan.

assisted livingLIFESTYLE AND ENVIRONMENT CONTEXT
Below we will go to patient context information, but lifestyle habits like smoking, sedentarism, eating habits working hours, etc. should be recorded, as well as the physical working environment, the kind of work, exposure to toxins, radiation, if it is a night or a day work, stress levels, etc. But the environment is more, also the housing and housing conditions (damp, lack of light, etc.). What about heating, air conditioned, assistive technologies. The kind of district  is important (has it factories or other pollution sources, has it radiation sources?) and what social services are available.

PSYCHOLOGICAL, SOCIAL AND CULTURAL CONTEXT
While lifestyle and environment are factors with high impact on clinical factors, the social and psychological context as well as the individual psychology explains often the environment. Income and socioeconomic status –as well as the often linked education level- define primarily the environment, as well as the health habits and the believes about health. Believes and habits are often culturally shaped, so that ethnic and cultural background are important.

The patient’s psychology is conditioned by context and otherwise, conditions  the context and allows adapting, resisting, accepting or escaping it. Psychological attitudes will influence health too and as well the way to deal with disease and death. The most important point here are family and friends. Who are they and how they influence and are influenced by the patient. Family and friends are the primary source of support. On the other hand, more personal factors such as each one’s stress line and resilience are important too; the mental toughness and the positive emotions. Last but not least, on a more intimate level, each one of us has life goals, a willing to live and an attitude towards suffering, pain and death.

Information versus knowledge
With all these factors in mind, now it seems clearer than in the last post, how little knowledge we can make out of terabytes of EMR data and how much knowledge there is upstream of the clinic.  Having environment and context in mind, the picture of the patient is much richer and also the medical strategies can be more productive. The so called biomedical paradigm can be enriched positively with new relevant knowledge.

Face to face interactions and upstream medicine
The classical medical categories can be gathered from ERM and other IT data and care information from protocols (process data). But the context information can only be produced with face to face interactions. Doesn’t it seem interactionuneconomical to conduct a qualitative research for each individual patient? It is not needed: qualitative studies are necessary, sure, but they can be turned easily into scales that can be asked in a conversation by the physician. And does the medical consultation time not become much longer if together with physical and genetic tests physicians have to make psychological interviews and ask questions about environment, lifestyle, context and family?

On one hand that is precisely what we want, have more time with patients and conduct meaningful conversations with them. A scale and an interview are a conversation guide. On the other hand, like many tests are outsourced to specialists, psychology tests can be outsourced too. Environment information and some of the social and cultural information can be gathered on line as a pre requisite for a medical appointment (at least for the first one and then routinely ask before each new appointment to fill in the changes).

The patient intelligence system
gene-dna-spiral-printer-cartoonThese are the bricks for a patient intelligence system. How to build the system? Here there are already hundreds of knowledge management and business intelligence applications that can be bought or used as inspiration for a tailored solution. At IVF-SPAIN we are working already on one. We are not using all of the factors, but a much simpler model: just those we need, and others that I may disclose in future.

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. www.iexp.es 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. www.iexp.es

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