Patient experience and Co-Creation in Health

Co-creating patient experience in health, pharma and wellbeing


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“Medicine is not dehumanized, but healthcare yes”

The Spanish 20th Congress for Healthcare Humanization took place in a Madrid Hospital on May 27th and 28th this year.

Concha Zaforteza

Concha Zaforteza

One of the most interesting speakers was Dr Concha Zaforteza, an outstanding specialist in the use of participatory methodologies for change management in clinical praxis. More about her brilliant path as a researcher and nurse can be read here (in Spanish).

During the congress I had the opportunity to talk to Concha Zaforteza about humanization, participatory work in healthcare and the value of nursing studies.

You have worked applying participatory methodologies to improvement in clinical practice with critical patients. Can you describe some examples?
We have conducted three participatory action research projects in three intensive care units (ICUs) on the Balearic Islands in order to improve attention to relatives of critical patients. I say “we have conducted” and not “I have conducted” because we are a research team of 13 ICU professionals. Besides, 120 more professionals worked altogether in the three ICUs.

This research took over 3 years and we achieved specific changes. For instance the enlargement of visit hours, the increase of vocational training in the management of situations with high emotional impact or the publishing of a care guide for relatives of critical patients, among other initiatives.

Another change happened in the way ICU professionals perceived patient relatives. They ended viewing them as foreign actors and started seeing them positive resources for the patient.

What are the most important advantages of participatory methodologies?
In the context of healthcare we observe an international concern on how to produce changes in clinical practice when we have not the best possible practice. Or when the best possible evidence is not applied. In the 90s people tend to think that the publishing of guidelines for clinical practice, healthcare professionals would apply them straightforward and thus care would be closer to the “ideal”.

It was a good approach, but it did not take into account the complexity of healthcare environments nor of its “inhabitants” (actors). Therefore, the problem was far from being solved.

Nowadays, these particularities are acknowledged and it is admitted, that change approaches must be multifaceted and designed for the environments they are targeted to. In this sense, participatory methodologies, that give voice to those agents more involved into the problem, developed solutions within the context and sustainable in time.

Action research: a kids workshop in nanomedicine

Action research: a kids workshop in nanomedicine

And what are their disadvantages?
Good question! There are disadvantages without any doubt. It is a matter that has not been researched, so that I can only speak from my own experience and from those projects done in the public and private health sector.

First, they demand a huge energy investment, so that those initiating this kind of processes have to take this into account and be ready for that. Second, they have a glass ceiling when they are confronted with structural barriers and decisions taken outside of the context where they have been designed. In order to overcome the glass ceiling more energy is needed as well as true strategic skills. Third: from my point of view they need an effort to balance the interests and priorities of all participants. Without this balance, participants may burn out because their expectations have not been met. This is a very important task of the main researcher or facilitator.

I imagine it is very difficult to co-design with critical patients, but do you work with relatives?
Indeed, it is very difficult when the patient is unconscious. But with the conscious patient, if you manage his anxiety I believe it can be even therapeutic. Regarding the family, I believe it is possible to co-design with them. They can become very privileged informants.

Recently, talking to a physician about a study to improve patient experience, he told me “this is a nurse study”, implying that he was there for “serious science”. What is the impact of “nurse studies” in clinical improvement and cost optimization?
It depends very much on what we are talking about. There are studies where quantification is easy and other where financial valuation would be irresponsible, because certain things cannot be quantified with classical evaluation strategies.

I will tell you a classical example: pressure ulcers (PU). Pus are wounds that appear in places like heels, sacrum or femur trochanters and that happen when the patient is in bed for a long time and immobilized due to the pressure the tissue experiences between the bone and the mattress. They are serious wounds that can take over 155 days to heal. Nurses have a crucial role in prevention. It is said that 95% of PUs can be avoided. There are four degrees of seriousness. Well, if nurses invest time in prevention they save 1.738 if the UP is of degree 1, 87.906 if it is degree 2, 146.552 at degree 3 and 178.066 at degree 4. This besides of all the SUFFEREING and pain you can avoid.

Therefore I doubt a study can be regarded as not serious if it is not done by a physician.xx jornadas

There is in Spain a project, “Humanizing Intensive Care” you know well (we recommend this interview with Concha Zaforteza. Is medicine really so dehumanized or have we become very demanding the more medicine develops?
Not medicine is dehumanized, but healthcare. This is even more serious, because it implies not only physicians, but also other healthcare professionals. I do not dare to say we are dehumanized: I would say priorities have to be reset and we need to go “back to basics”. We are so disease centred and so much focused on specialized knowledge that it seems that those aspects of care that do not have the name of a pathology do not count. Therefore, achieve that a patient sleeps, rests, that he gets washed and not harm his dignity, manage pain acknowledging that each one feels different … remember that we all like a smile, we all need company, they seem sometimes like goals from another universe.

Thank you very much for such an interesting talk.


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When citizens co-design healthcare services – the case of Participle in the UK

By Kate Bagley, Participle

Participle is an amazing non-profit organization that contributes in a very interesting way to patient centeredness and to better healthcare services in the British National Healthcare System (NHS) by using –as the name suggests- participation as one of the main tools. Participle’s projects have a very interesting impact in terms of health, relationships and communities. Participle has contributed to quality of life of elderly by reinforcing their social ties and building up new social networks (real ones, not virtual) or has contributed to local employment and entrepreneuring opportunities for the youth. Participation, or co-creation, as it is used to avoid the social implications of the term, is a key tool in service design and success.

We have invited Kate Bagley to answer some questions about participle, but she has done it so well, that we have let her answers in form of an article. Thank you very much, Kate.

Kate Bagley, content manager Participle

Kate Bagley, content manager Participle

Hi, I’m Kate Bagley, Campaigns and Content Manager for Participle. I run the Relational Welfare blog and @weareparticiple. I work helping to spread our message about how we want public services to work in the UK. Due to the nature of my job, I get to see our work across the range of our projects, so I have a bird’s eye view of what Participle is doing. Hopefully that will help me as I try to answer your questions!

What is exactly Participle and what is its contribution to healthcare?
Participle is a social enterprise which focuses on service design. We want to help create a welfare state fit for the 21st century. Our services are prototypes for the kinds of services we want to see making up this new welfare state.

One of our guiding principles is that we want our services to help people build up their own capabilities – what they are able to be and to do. The concept is similar to the old saying: “Give a man a fish and you feed him for a day; teach a man to fish and you feed him for life.” Out of all the different human capabilities, we believe the most important is the ability to form relationships and make human connections. Everything we do has human relationships at the heart. We call this “Relational Welfare“.

In the UK, we have a lot of affection and pride for our National Healthcare Service. But because it was designed to handle acute health problems (like a broken leg), it is not very good at handling long-term health problems with lots of complexity (like diabetes or obesity). Nowadays, we are seeing more health issues associated with old age or “lifestyle diseases”. We have created a prototype health service, Wellogram, which was built to handle these types of health concerns. (More on this below).

What makes Participle different?
There are many things that make us unique, but what most people say is that we have a good blend of practical experience on the ground delivering services combined with a big, high level ambition: reforming the welfare state.

As far as I am aware, we are also the only organisation in the UK to be measuring how much our services are helping people to boost their capabilities. (If you know of any others, please send them to me. We would love to compare notes.) Our capabilities measurement tools are in the earliest stages, but we hope that one day, they will change the face of impact measurement. As of right now we will be looking for service designers and people who would make good ‘relational workersin the coming months. A ‘relational worker’ basically, it is someone who is a frontline service worker who is good at building relationships with the people they are trying to help.

The Circle Movement  A membership organisation for older people, which takes care of everyday worries via a strong social network

The Circle Movement
A membership organisation for older people, which takes care of everyday worries via a strong social network

Why do you see yourselves as heirs of Lord Beveridge and what is Beveridge 4.0?
As you may know, William Beveridge is one of the architects of the welfare state in the UK. He published his most influential report in 1942, which led to the founding of the National Health Service. But towards the end of his life, he realised that he had made a mistake. He published a third report in 1948 voicing his concerns that he had forgotten to include the power of citizens to contribute to and shape services. Our mission statement, which we call Beveridge 4.0, builds on this idea and asks for 5 important shifts in the way we think about public services. They are:

  • from meeting needs to growing capabilities
  • from targeted services to services that are open to all
  • from a focus on finances to a focus on resources
  • from services delivered from centralised institutions to services delivered from distributed networks 
  • from supporting individuals to supporting whole social networks

Why is co-creation so important for Participle? Is there a difference in results with or without patient co-creation?
Co-creation is an important part of our services, all the way through. We would not attempt to create a service, or even research the problem being addressed, without first spending time and getting to know the people affected by the issue. All of our proposed solutions are inspired by what they tell us, and tested by them. As our services grow and develop, they are constantly shaped by the members that use them. We want people who use our services to feel that they own them, and that the service would not be as good without them being a part of it. It is a type of constant co-creation. We wouldn’t want it any other way.

The Participle process

The Participle process

What projects in the health care sector are you most proud of and why?
Our prototype health service is called Wellogram. It helps people take control of their health and stick to healthy habits. We’re open to anyone who wants to use the service, but most of the people we see are struggling to manage a long term or lifestyle disease. In the UK, doctors have less than 10 minutes per patient to resolve the problem. But we know that if you want to help someone change their behaviour, you need to get to know what’s important to them, and what is triggering their unhealthy habits. With Wellogram, your GP refers you to a Guide, who will sit with you for 30-60 minutes as often as you wish to see them (typically every two weeks). The Guide doesn’t give you advice; instead they help you figure out a strategy for achieving the health goals you want.

This service is still in the prototype phase and only serves South London, but we have seen very promising results so far. Sixty-four percent of our members say they’re better able to manage their health, 75% have lost weight, and 72% say they’ve increased their ability to engage with their local community.

What is the real impact of your projects?
We aim for all of our projects to grow people’s capabilities, especially in the area of relationship building.

As I mentioned above, we are developing a tool to measure how effective we are at this. We are using it in our work right now, to test and refine it. We are pragmatic, so we also measure more traditional outcomes like blood pressure or cost savings, for example. You can see the impact our projects are making, and read detailed reports on their progress, on our website.

Is there a job market for people specialist in patient engament, patient co-creation or healthservice design in the UK? How does this market look like and what kind of professionals work there? Do you think there will be one in Spain one day?
It’s hard to say. Although we are asking for a more relational welfare state, we’re not sure yet exactly what role these ‘relational workers’ will play. Will the relational aspects of services be taken care of by people who specialise in doing only that, or will everyone who provides these services need to work relationally? Either way, we think relational workers will play a vital role in the future welfare state.


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Does financial capitalism spoil patient care?

In his excellent book “The collapse of globalism” John Ralston Saul criticizes modern financial capitalism and the “globalist” ideology” for being responsible for the dismantling of basic services and public goods to the private sector, like healthcare, in many Western countries, without that this movement turned into a more efficient healthcare system. collapse of globalism

Now that elections to European Parliament have marked a drift between towards radical positions, both left and right, demanding more nation, more state and a re-gain of control over national means of wealth- like healthcare, Ralston’s thesis seems to be confirmed.

Ralston’s criticism is not about private ownership nor about private initiative, but about the managerial ideology born at multinational companies on how public affairs should be run in order to achieve the famous market efficiency. Ralston argues that when you manage instead of leading, the result is structure control instead of visionary development; the result are policies in the self-interest of managers, not in the company’s (or the country’s) interest. One may wonder if managers have not become a sort of corporate politicians and politicians not a kind of national managers.

Two healthcare capitalisms – the case of IVF
Ralston’s thesis can be best observed in private healthcare and specifically in IVF. IVF is a sector clearly dominated by private healthcare. Yes, provided in many European countries as a public service, the fact is that private sector pregnancy rates and birth rates are better than public sector ones. Unlike cancer therapies, lung diseases or heart treatments, where the public sector clearly beats private healthcare (in Europe at least).

healthcare capitalismThe reason for the private’s sector success in IVF may be found in the complex interaction between biological infertility, patient emotional structure and psychology and social/cultural values assigned to maternity. This complex interaction makes it difficult to design standard processes based only on clinical intervention and hospital efficiency; here time for active listening and patient engagement is a value; a resource often public hospitals luck due to the pressure of being quick and efficient. Social security pays usually 3 IVF cycles with a fixed number of tests (spermiograms serologies, hormones, etc.), while private clinics offer a broader range of tests (genetic, special sperm tests for male fertility, endometrial analysis, etc.) and allow more cycles; of course for money. The key to success is not volume, like in cancer; the key to success is attention.

Since the beginning of IVF 1978 this specialty of gynecology has grown to a true global industry in private hands. The once small clinic where it all started, Bourn Hall, is now a global chain of fertility treatments. As Bourn Hall, other groups, for instance like the Spanish IVI, have grown and attracted investors of finance capital. These groups are traded in financial markets as commodities and strategic decisions are taken considering impact on financial markets, not on the enterprise, and –of course- not on patients.

Gulf States – a clinic managed by financial capital
Most of the Gulf States are now a sort of Eldorado for American and European fertility groups. The managers working for these groups I met complain about the same things I resume in a general statement, that could be valid for every one of my partners: “every day I get several calls of the investors in New York (or Frankfurt, London or Paris) asking how many cycles we had, if the cost cutting program was already showing results, if I reduced headcount… planning is impossible, realistic figures are out of discussion. All what they want is high profits and now!” ivf abu dhabiManagers of international IVF centers in the Gulf complain that these calls come also in the middle of the night, early in the morning; and they come from people that don’t understand the business, don’t understand fertility and of course don’t care about patients: results are only important to them if they attract new customers, but not by themselves.

Spain – a clinic lead by family capital
My experience working for IVF-SPAIN is the contrary; of course working for this clinic biases my perception and the way I write about it; but I have seen enough big and small companies to be honest about my writing. As a private clinic, IVF-SPAIN is of course driven by the need of earning money and it was set up as a business, not as a charity. In this sense, as the groups in the Gulf, it is a capitalist business.. Probably the owner is as sleepless as the global clinics manager with more reason: he does not only risk his job, but also his money. But here all similarities end. The difference with a finance capital run clinic is huge.

This clinic has been built upon patient’s needs: for instance consultations are long; they can take several hours; the design was patient co-created. Results are all; not just because good results are more likely to bring new patients, but because the ownership is composed by physicians that have worked long in gynecology at births, making on call service during the nights in hospitals, working in research (pharmacology, oncology), which is not exactly lucrative… they have seen thousands of patients in their lives, they had to share sorrow about

Longer consultations with patients

Longer consultations with patients

miscarriages, infant death and other terrible events in medical experiences, but also the joy of bringing many babies to life. These experiences are not those of managers. Results are the ultimate goal for these doctors, because they can’t do otherwise. And as a result, IVF-SPAIN can show Spain’s highest scores in egg donation and probably ranks among the best in Europe.

As a small business, money is managed carefully, but as a physician’s business it is aware of the importance of research and innovation in order to increase pregnancy probabilities, but also to make patient’s life easier, try to shorten the stay at the clinic. With less resources than big IVF groups it has managed to make an agreement with Alicante University to set up a human fertility chair and thus to be able to do meaningful research using both own and university resources. It has managed to co-operate with leading science groups, like Professor Munné in preconceptional and preimplantational genomics.

It has become a successful business, yes. When I look back how it started in 2009, with no own facilities, renting hospital rooms, paying for the use of an embryology lab 100 km from Alicante and working from a flat as an office it is clear to me, that the driving force for growth was not financial investment, was not marketing, was not super-professional management. It was patient care, getting patient’s trust and thus achieving the word to mouth effect needed for the start.

Healthcare capitalism against healthcare capitalism
Steeling Michel Albert’s idea of Anglo-Saxon capitalism (only profit oriented) against Rhineland capitalism (socially embedded), we could say that at healthcare there are also two kinds of capitalism: finance capital funded clinics and socially/family embedded capital funded clinics. At IVF there is a difference in results for patients among both kinds of healthcare capitalism, as we have seen. capitalismvscapitalism

I am not denying that big healthcare groups can produce great results: more R&D budget, economies of scale that allow funding of high end technology, larger staffs devoted to care and big investments in patient satisfaction and patient centricity. There is also true engagement from physicians, nurses, embryologists and staff … yet, why does patient centricity, why does patient satisfaction at global corporations need so huge marketing budgets? And why does word to mouth work so well in close to patient working organizations driven by doctors?

My guess: if patient is in the forefront for you instead of only margins, patients do not need to be convinced by marketing.