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

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

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.

I was preparing an article on patient centricity in IVF when by chance I found in “Human Reproduction” this old article of 2006 on the use of personal medical records in IVF practice. Although almost 9 years old I find the article very relevant for today, since user or patient driven design in IT are still not very much extended in the IVF world.

The article describes the design and implementation of a patient-accessible electronic medical records system in a Dutch hospital for patients undergoing IVF and ICSI. These systems allow patients to access and maintain their own data, the so called personal medical records. The authors stated 2006 that most of these systems were “commercial products developed for the public, but only in a few cases PMR have been developed for specific patient groups”. 

The system was designed in a series of iterations and questionnaires with potential users. Based on patients answers and an expert evaluation of them, the developing team could develop new unforeseen functions such as a day planner and personalized prognosis. This lead to a prototype evaluated by patients in interviews. The interviews were useful for fine-tuning the functions, but they did not result in the creation of new functions.

The evaluation of the system by 199 patient couples showed that 76% of users were ready to pay for the systems and that in 72% of the cases the female partner was the active user.

Patient centred vs. commercial IT developments
In my experience, working with users is of enormous added value. In the case of ConnectAlzheimer, the Alzheimer caregiver platform developed with I2Cat in the frame of the SeniorLab  project described in the last post, the work with users showed that depression was frequent among caregivers (but of course, invisible) and thus an unspoken need for psychological assistance. Standard requirement identification would hardly found this need and therefore assistance would not have been included probably in the system.

Regarding IVF, when IVF-SPAIN started 2009 it had very few patients and the IT was not very developed. A patient helped the clinic with its first patient management system and developed an excel sheet, we called the “Behandlungsplanung”. Of course this system could not cope with the huge amount of data that came when the clinic grew. But it could do something very good: most of our patients (90%) are from Switzerland, Germany and the UK. The treatment takes place at their home, far from the clinic; expect the first consultation and the punction and transfer. There is a personal assistance via mail and phone and also a counselling on medication during the stimulation phase. The excel could manage all these data perfectly.

When the clinic was looking for a new professional IT system it chose an Austrian solution because it was developed by a clinic. Yet, developed by a clinic meant doctor and not patient centred. The system turned out to be inflexible and difficult to manage in day to day life. It contained everything a clinic needs, but in such a non-user friendly way that many functionalities stay under used.

In fact there were big discussions with the providers during the customization phase in order to adapt all the flexibility of the Behandlungsplanung (BHP). The main difference was that the BHP was created by a foreign patient that knew what it meant to be far away from the doctor during stimulation. The Austrian consultants had developed a system for patients that can visit the clinic every day. They refused to adapt their program to foreign patients. At the end, the clinic developed its own system, with the BHP functionalities and included also a round of patient iterations in order to make it patient centred.

Dr. Roser Garreta explains the use of ethnography in ictus patient assistance

Patient involvement is good for patients and good for healthcare systems. For instance, the complex chronic patient (CCP) program of Barcelona’s Sant Joan de Deu Hospital has reduced hospital admissions of these kind of patients by 60% and 62% of emergency admissions. It is a great success because chronic patients are among those with a higher use of hospitals: they make multiple visits, are often polymedicated and there are many different cases to treat.

The seminar took place in this beautiful modernisitic building from the Catalan Healthc Department

This is what Doctor Xavier Martet explained at the working session “Patients and Quality Assistance at Healthcare”, organized the past January 23^rd by the Catalan Health Ministry at its very beautiful modernistic location in Barcelona. The Ipsen supported seminar was structured into two parts: first doctors and healthcare institutions spoke about patient engagement programs for better assistance, while in the second part patients spoke about their experiences: give a voice to the patients was a great point by the organization.

Multidisciplinary teams are changing attention
The results of Sant Joan de Deu hospital described by Doctor Martet were possible thanks to a special program that included patient training (on how to breath, for instance), a multidisciplinary team composed by cardiologists, pulmonologists and other clinical specialists. According to Doctor Martet, multidisciplinarity is essential for success; this was later reinforced by patient’s associations.

Multidisciplinarity means for many hospitals changing their departments coming from the old fordistic organization by departments by cross-department teams. Consequences are not only of organisational nature, but have a physical translation to architecture. For example, only  2 days ago, the Klinikum Grosshadern in Munich announced the demolition of its old “industrial” building from 1973 in order to  build one that is more prepared for multidisciplinary teams (shorter pathways) and technology (read the news here).

The seminar was a success

Recently the well-known specialist for healthcare technology and nurse José María Cepeda wrote in an article in the leading Spanish nursing magazine, that the historical opposition between technology and humanities seems to be vanishing. The Munich case and the Sant Joan de Deu program seem to give Cepeda right. Those interested in the CCP program for mental health can have a look to this video (in Spanish)

Ethnography as a tool for quality assistance design
When it comes to design programs like the one presented by Dr. Martet or others like the one explained by Dr. Sánchez de Toledo in paediatric oncology at the Barcelona Vall D’Hebron hospital, ethnography turns out to be a very useful tool.

Dr. Roser Garreta explains the use of ethnography in ictus patient assistance

Doctor Roser Garreta, head of the rehabilitation unit at Mútua Terrassa, presented an ethnography done with cerebral stroke patients and showed that many insights were obtained that showed the change the disease meant for the patients, how ictus affects relationship with partners (and threatens them seriously), with children, friends … how family and social roles change completely … and how feelings of frustration, dependence and anger are born.

The insights showed also what kind of aid is needed to overcome the disease, how mobility, co-ordination, information and training can be increased for the better. Thus, the patient’s life could be significantly improved with the help of volunteer organizations, with a phone assistance service, with social integration initiatives and with the role of the expert patient; a role that was mentioned by all speaking doctors and was strongly demanded by patient organizations. The ethnography also helped to identify commercial products and services needed by ictus patients, like tele-rehabilitation, dispensers or special clothing.

Patent’s voices
Patient associations were present at the seminar: kidney, hepatitis, neuromuscular, rare diseases, diabetes and spasticity were represented. May be the working session would have been more interesting if patients spoke first about their experience and context, so that engagement programs’ impact could then be better understood.

Patients exposed many experiences were their quality of life during treatment could be frankly improved. But all agreed about the fact that the lack of multidisciplinary teams was a great burden: many more hospital visits than necessary is the consequence, as well as the voice of somebody who has the global overview of all the case. Thus, a loss of quality of life and a hindering of their working and family time has to be added to the suffering caused already by the disease.

Claudia Tecglen, President of the Spanish Spasticity Associaation

This is why all patients demanded multidisciplinarity and the need of an expert and active patient as a key success factor for therapeutic results and improved quality of life, as Claudia Tecglen, head of the Spanish Spasticity Association, stated.

Congress speakers

The past 28^th to 30^th of September a very interesting congress took place in Alicante organized by the IVF-SPAIN Foundation and Merck Serono. The main focus were new technologies for human reproduction, especially time lapse predictive technologies, but also genomic and endometrial technologies. This video shows in short the congress best moments. What do IVF technologies mean for employees and patients? Despite all the focus on clinical and technical aspects, one question that was often heard in informal conversations was “what do these technologies mean for our embryologists and what or they mean for our patients?” Predictive time lapse technologies like Eeva (Early Embryo Viability Assessment) can identify in a more accurate way than embryologists, which embryos are more likely to implant. As a matter of fact, studies show higher implantation and pregnancy rates when using Eeva. Diego Ezcurra, technology head of Merck Serono, stated during the congress (see TV news in Spanish) that there are already prototypes for automated cell injection; a pretty artisanal work of embryologists. Other automation possibilities are sperm vitrification and embryo assessment too. Anthropologist Sarah Franklin describes in “Biological Relatives” the paradox of IVF labs as a sort of high tech uterus (ex vivo) with  a highly degree of manual and artisan work of the pre-industrial sort. Definitely by 2020 the artisan component of the embryologist’s work will, if not disappeared, be almost extinguished.

Automated embryo selection – Eeva

Sarah Franklin describes also how the embryologist’s work and the lab themselves are a mystery to the patient, who often does not understand well how embryos develop (usually an intimate process related to sexuality and the own body) in this high tech setting (not intimate and outside the body). The patient finds herself in front of a black box. Seldom patients assign a sort of “mystic” attributes to the process; ethnographic observation in IVF clinics shows that patients bring into treatments cultural and social beliefs: religious, spiritual, superstition or self-constructed mental schemes, for instance related to genetics (see articles by Paxson, Inhorn, Gurtin). Nurses and assistants report the same in my observation. Also forum analysis shows that superstition and self-made mental schemes belong. Automation technologies like Eeva promise to put an end to the mystic and black box character of the embryology lab and make all the process easy to understand  and transparent to the patient. But, will technology bring more transparency? Do technologies make clinics more patient centered or more self-centered? Historical experience tells us that technologies are primarily developed and bought for companies’ sake, not for customer or patient convenience: Labor cost reduction, productivity increase and customer data have been since the early 1800s and still are main drivers for technology development. Why should lab automation technologies be different? In fact, research and experience suggests that massive medical technification has been one of the main reasons for the decline of a more personal patient-physician relationship. A technification that has saved many lives, but that might have contributed to open a gap between doctors and patients; more precisely, organizing healthcare institutions around technology and thus changing the doctor’s role. This is the only the opinion of Gabriel Heras – intensivist at a Madrid Hospital- (see video in Spanish with English subtitles) who runs a very interesting blog pleading for the re-humanization of intensive care. Literature is divided, some authors argue with Dr. Heras that technology took patients out of the center (see this article) and others see evidence that it is rather the contrary, like this experience in a neonatal unit. A good balance between both positions can be found in these findings of the American Medical Association. In this sense, the described evolution would support the initial thesis, that all technologies are developed for the organization’s sake; customers and patients would only benefit indirectly insofar their benefits means more income, productivity or efficiency for the organization. Is patient centered technology enough? This might be true for classical medical technologies where IT has played a major transformation role: IT assisted blood and other fluid and tissue analysis, scanning and ultrasound and also e-health. And, of course, ERP, quality, CRM and management IT systems that force patients and professionals to go through paths previously designed by experts and consultants; thus more oriented to the organization’s self-interest. Of course, it is a relative truth: many technologies have been developed for the patient’s direct benefit, like surgical techniques, tomography, etc. Yet it is true, that many technologies have obtained more rejection than acceptance and for this reason, more and more designers work with user or patient centered approaches. Including the patient context, insights from family, caregivers and other approaches has been undoubtedly very helpful. UX methodologies and living labs have contributed to greater patient acceptance of medical technologies,

AAL technology is not accepted by patients

But is this enough? In many cases it is, in other, for instance, e-health for elderly (what is known as ambient assisted living or AAL) this approach has not lead to the expected results. Cardineaux et all question in this paper (by the way, a good review of all AAL technologies) that privacy of patients is ensured with a 24 hour monitoring. For me the main sign that patient centered approaches are not enough is the failure of the AAL market and that the European Union still has to pour money in a sector that in the past 7-8 years has not taken off. Many of the solutions proposed, despite that the EU, explicitly demands user involvement for funding, do cut elderly from their already thin family and social relations. Furthermore, trying to control and monitor as many variables as possible and automate healthcare, many elderly feel as their independence and their ability to help themselves are reduced. Exactly this, and the high cost these technologies still have, prevents the market from working. The digital revolution and patient driven technology Of course patient centricity is a big progress and of course many AAL and medical technologies have clear benefits. The difference between a patient centric technology and putting the patient in the centre is not the technology, nor the design technology (if it is human centred or not). The question is if it is patient driven and empowers the patient. Empowering the patient means a paradigm shift for organizations: getting from an industrial perspective of economies of scale to a personal perspective. This is the reason why digital technologies and the web 2.0 are such a success: they create direct relationships between patients, professionals, organizations and companies that paradoxically are not possible within the organizational framework, where people interact face to face, and are possible on screens, where people do not interact face to face. The difference is the social setting. If you read José Maria Cepeda’s blog on 2.0 for healthcare professionals Salud Conectada, you will see that at the end all is about direct and more open and free relationships. This means, that they are not open and free within the hospital or the clinic. Personal medicine versus cost management Getting back to the embryo predicting technology, why does it work at IVF-SPAIN as a tool for patient centricity, and not (only) as a lab automation tool and time saver? Because since 2012 the organization is co-creating with patient insights to reshape step by step all processes to make them patient centric. So, a couple demanding Eeva in a boutique clinic will get personal advice about embryo development, decision making choices, transparency on how a lab works and understandable information on biological embryo development. A couple demanding Eeva  in a big industrially organized IVF group will be attended quicker and get nice videos on embryos for marketing reasons, but will never participate in the decision making process about embryos.

Personal Medicine

This is possible in boutique clinics with private customers. Is it possible in a public hospital? Is it possible without a cost and waiting list explosion? Here is where the patient or de industrialist approach make the difference: as a healthcare technology company manager you have to decide whether to develop a technology that allows more personal interaction with patients and more (or better or more frequent) time for patient-healthcare professional relationship or just another time and cost saver based on economies of scale. As a hospital manager you have to decide which technology to buy and how to use it from a patients benefit point of view.