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Can we move beyond lip service on the art of listening in healthcare?

By Philippa Göranson, Föreningen Enhörningen, Sweden

Listening in healthcare can be a very complicated matter and concerns many different aspects of healthcare encounters. Even if one spon­taneously asks oneself: is it not the most common sense thing to do? I have been caught up on this topic due to previous bad experiences in healthcare where the lack of listening properly or even listening at all was completely missing – even if I was speaking to a healthcare professional in the same room. After some time I got to read the medical journal, that one of the specific non-listening physicians I had met had been writing and realized I was only being observed. I even remember very clearly hearing myself saying repeatedly: “Can you listen to what I say?” Even that did not help. It just made things worse. It is as if it is up to the healthcare provider to decide when or even if to ask the relevant questions or if they even are going to be asked at all. That way of being from the healthcare provider’s side of things was planetree 3just pretending to hear. At this point of time in my life, I had had physicians who all acted likewise – they always excluded what I was trying to communicate and they got it all wrong. Incorrect diagnosis, wrong treatment ideas, no one even tried to put my story together properly. They seemed to want to start the discus­sion from a set of ideas or rules on how to ask questions and what questions to ask that does not always correspond to what the patient really has to say. Their structure of things made their compre­hension of why I even was attempting to get help into complete chaos. Later I came to understand what I had been subjected too and this is part of why listening in healthcare does not always work. The culture of evidence-based medicine is reductive, it simplifies and cannot handle the complexities of life that need to be interpreted and put intp context. Evidence-based medicine devalues individual experience. At this early stage, I started to wonder if I no longer could express myself. I have previously been a radio broadcaster and am a verbal person and I like words so that was not the problem. Actually, being a humanities student made me react to this hierar­chical structure very strongly and it made me lose faith towards the realm of healthcare and start to question their knowledge production. If they can’t listen properly what else are they getting wrong about medicine as a scientific field? Are healthcare providers not supposed to be humani­sts too? My idea of the humanist is about meeting the other and this kind of reasoning can be found in diffe­rent philosophical schools of thought. At one point when the lack of listening was exceptionally frustrating, I was asking myself: do we have to make listening in healthcare a human right? That was when I started to go to the university library to find books on other people’s experiences of healthcare and it was very helpful to see other people had noticed the same things as I and, sad to say, had even had even worse encounters than my own. I even started reading books on the medical law to help me get a bigger picture of the idea of healthcare.

In the end, everything turned out, but I had to force my narrative structure and storyline on top of how healthcare providers usually want to be addressed. I was sensing a cultural sensitivity problem and this aspect is imperative to better listening in healthcare too. Interaction is on the linguistic level. I understood I had to find a medical professional that comes from a different culture where the speaking structure is different from the Swedish way. Medical humanities research has also explained that to get the right diagnosis the patient and healthcare provider need to be on the same page when it comes to the use of words and their interpretation and how they are applied to make sense to each other. Not just that, Iona Heath explains in an essay in the BMJ: “Clinicians need to be just this – experts in the feelings we attach to words – otherwise our efforts to communicate with our patients will oscillate between the tedious and the cruel”[1]. There is also another side to this aspect explained by Dr. Gavin Francis in Aeon magazineUCI 2 “Storyhealing”: “War metaphors in health and healing can be valid, but bringing different ideas to the mind of each patient – an appreciation of storytelling can assist physicians to choose the metaphor that will best help their patients, and also help patients articulate inner experience to their physician.”[2] As a patient, one always has a story of some kind that cannot be neglected. My new encounter in healthcare was to become a part of a shift of paradigm in my life. The big difference now in this new encounter also was the attitu­de this person had towards information and sharing ideas with the patient and the appreciation shown towards a complete story as to how I also had come to understand myself. This medical professional happily took everything I had and replied: “Great! Otherwise, I would never have understood!”. At the time it felt like a surprise and that this person was actually listening. I could see it in the facial expression that something else was going on inside of this person. Later this doctor told me he even had one of my illnesses too. What actually happened here was the combination of the how and the why I even got ill and where a medical professional was integrated as in a more interpretive listening process. I was also due to all this going through a change from just being a passive patient into a combination of what is known to be called the healthcare consumer (knowing my patient’s rights and becoming better informed) and being the expert patient (knowing how to strategically manage myself through the healthcare system). This was something I had to learn by myself. One needs to be empowered before even being listened to properly in healthcare.

I have read a big amount of patient experience books, pathologies, medical humanities research and research by the nursing science. I do not even have to look far into social media to stumble across a twitter account defending patient’s rights where the beholder of the account defines the account with a message that says: “I am not a slave; I will not comply to tyranny”. Not being listened to is tyranny. On Twitter, I have also come to know the phenomenon called the patient’s voice. The fact that this has appeared also shows it is close to a human’s rights issue. The concept of the patient’s voice can be interpreted as the downside of the patient’s status in healthcare. The attempt of the patients’ voice is about something else. Patient’s voice is about change and is challen­ging to the healthcare structure. The patient’s voice phenomenon wants to create a better awareness on how hard thing can get for a patient and is a way of questioning what is not working. On a personal level, it can also be about just being listened to in healthcare in a one-to-one situation. The idea of doctors’ ears is not being used very much on social media to debate the lack of listening in healthcare. At least not yet.

There are a variety of hashtags on twitter and one even explicitly concerned with listening to patients’ #listentopatients. It is as if healthcare providers have a particular form of hearing im­pairment. Hearing is easily something that can get mixed up with listening. Listening is a much more complex process than just hearing. The big difference between hearing and listening is that listening is part of a hermeneutic process that integrates both intellectual and emotional capacities to extract the correct meaning.

How can patients be perceived through the lens of listening instead? A listening culture or feature is about trust. Researchers have come to regard, especially three components as most important to listening: empathy, being inclusive and supportive. This is not easily handled in healthcare. Still, is it not just common sense?

meditation doctorOver and over again, I see the same thing being pronounced and debated about healthcare and the big problem with not being able to deliver the right care and attending or even listened to. Head­line such as: “Healthcare has to be able to listen to patients” just appeared the other day in the Swedish daily newspaper Svenska Dagbladet[3]. The headline concerned a report from the Swedish authority that analyses healthcare from the point of view of the population, Myndigheten för Vårdanalys, “Vården ur befolkningens perspektiv” (Healthcare from the point of view of the population). Only one third agree to that Swedish healthcare is actually working. There is an international comparison and Sweden is not the worst country in the world but the strangest thing is that Sweden, in general, is understood as a democratic country, not in the healthcare setting. The level of patient participation is 69 %. Germany is ranked as best on patient participation by 87 %. Do healthcare professionals explain things so patients understand? 78 % of the Swedish population responded positively. In Australia, 93 % of the population responded positively to having being addressed comprehensively. Only 43 % of the Swedish population says doctors even discuss treatment options and risks. Australia ranks highest at 69 % in this regard in the report. Only 23 % of Swedish patients get a care plan to help them navigate their care. In France, the population says yes to this by 53 %. This just to give some examples. The study is the results from The Commonwealth Fund International Health Policy Survey[4]. Why are the cultural differences as big as they are? Does it have to do with if a country has a national health literacy strategy or not? More in-depth political, cultural and historical processes can give explanations beyond that I am sure.

What I am missing from this Myndigheten för Vårdanaly is the phenomenon the patient’s voice – the struggle people have in the healthcare process. How hard it can be to even get the correct diagnosis and integrated care needed. At some point, these repetitive stories people have need to stop. An article by Tiffany Simms,”When ‘Once Upon a Time’ gives us more than a story” gives a very good account of these problems and the problems patients encounter in terms of not being listened too. Tiffany is discussing from the listening point of view and her example concerns people with autoimmune disease and how many years it can take for the patient to even get the correct diagnosis. In the meantime, many are being really badly treated even when it just comes to communicating. It is sort of like a battlefield about what symptoms seem to be real or not or how they can be interpreted and Tiffany adds: “Even when patients are listened to, healthcare providers only care for the symptoms and leave root causes unaddressed.” Lab reports trump patient experiences. Or as Tiffany is explaining and I am sure many patients or their next-of-kin will recognize themselves in the following statement: “A doctor should be a partner in making you healthy, but for the most part I feel on my own. I feel like a doctor should say, ‘Okay let’s start with the most natural, least invasive way to help you heal, and if we need to go to a stronger regimen then we will’ instead, it’s always ‘here’s a medication with worrying side effects. Next please”[5].

If I go hunting on different social media channels or patient engagement accounts for prayerpatient advocacy, health literacy, patient participation, patient associations, individual patient bloggers, and even medical professionals – they are more or less telling the same story of what a catastrophe the lack of listening is in healthcare. Have we really looked deeper into what this lack really is about?

It is not about the lack of soft skills. I just need to look closer at what narrative medicine is about and the threat against it to understand how hard listening in healthcare is. On Wikipedia the obstacles against narrative medicine goes like this: “People who are physicians have been trained to believe, that it is a scientific objectivity that makes them most effective, in their efforts to un­der­stand and resolve the pain that others bring them, and a mental distance that protects them from becoming wounded from the difficult work. Objectivity, empathy, and global thinking are stated not to be incompatible with a degree of dissociation from the patient’s suffering that is sufficient to protect oneself.”[6] It is not only that. I have looked at textbooks that are passed out for educational use on patient communication and these texts always look good. The bigger problem against listening in healthcare is what is being said and can be taught in medical education classes. I even attended a medical class once just to see for myself what is going on and what is being said and how long it takes to see and hear how healthcare professionals are taught not to respond to patients and to deliberately not pass diagnosis out even if that is what a patient seems to have. I only needed to be a fake medical stu­dent for one medical class and it all happened within ten minutes. I know this is not represen­tative for the whole, at the time I told myself I do not need to see more because I was sure it might even get worse if I saw or heard more. The culture of oppression in healthcare is real. My observations can be confirmed with the help of the medical memoirs of the Swedish novelist and Doctor P. C. Jersild. In his memoirs, he explains how it usually works, when and how doctors are taught not to listen to the patient’s story. When practitioners train medical students in the healthcare setting, they also teach them how not to listen. If a medical student tries to be attentive and let the patient speak from beginning to finish the teaching practitioner, will make sure to correct the medical student and then make sure to show how the patient’s voice is not allowed by being interrupted as soon as possible[7]. This is just one part of the problem with listening in healthcare. Other sides of these non-listening behaviors are actually even stranger than what has just been said. Doctors are train­ed to think thematically and they at times do not even let the patients explain themselves. Doctors are not trained in how to make meaning out of how a patient narrates. Already just on their way to greet a patient in the waiting room, they can have decided beforehand what the pati­ent has or that patient does not have anything at all. At least 20 % of all misdiagnosis are due to this kind of error in thinking strategies according to Dr Jerome Groopman. Doctors do not want to interact with people with mental illness conditions. Doctors do not even want to interact with people who cannot communicate properly[8]. I remember sitting in a waiting room and a woman next to me grabbed my arm and asked what is wrong with doctors. It is as if they already have made up their mind on what one is seeking help for even before one has had the chance to explain oneself. The healthcare setting is disturbing and constructed in such a way that it actually creates harm. It is not easy to make oneself heard in this environment.

healhcare consumerismIn the healthcare debate, there are very many different managerial concepts that might just help make things worse. Sometimes it almost seems like different managerial concepts for healthcare are most suited for debate and not the reality of healthcare. The debate is of course very interesting to follow, but does it really help? Are these concepts really helping to reshape the culture of healthcare? The situation is very ad hoc concerning who actually listens to the patient or not. All these different managerial concepts are tiresome. And the only thing they really have to do it to listen to the patient to get it right. Physicians often deliberately choose not to take into account what the patient actually is saying and why it counts. Even when a patient is just trying to give correct information or add on details that have been lost in the continuum of the healthcare process.

The debates I have been reading concern the following concepts:

1) New Public Management. The patient is currency.

2) Patientcenteredcare. The patient is an individual. The patient is interpreted by others.

3) Valuebasedcare. Patient reported outcomes measures. Doing the right thing. Patient participation.

4) Personcenteredcare. Holistic approach to the patient’s life and health issue/s. Patient awareness.

Healthcare providers do not discuss prognosis or what the patient can do to improve their quality of life. The providers do not even explain what steps are to come next regarding treatment plans. They do not let the patient be involved in how to help the patient also help themselves to better healthcare outcomes. Listening to patients is also about giving patients the right kind of infor­ma­tion at the right time. The other day I read a blog entry by the most prominent Swedish e-patient Sweden even has, Sara Riggare.

Sara Riggare explains that being an informed patient is a provocation. She uses herself as an example to show how the culture of healthcare works to force her to diminish herself instead of making her more competent or even feel better. Just trying to ask well-informed ques­tions is a provocation on the healthcare structure. Instead of being able to knowingly being a part of a patientcentreredcare situation where the physician actually listens to her questions she is for­ced into a physciancentered way of managing herself and it makes her play the role of being ignorant. The culture of healthcare is always very apparent for a patient and Sara Riggare has learned she has to play buy the rules as of an Albert Einstein quote: “You have to learn the rules of the game. And then you have to play better than anyone else.[9]” Sara Riggare is an empowered patient who only wanted to be listened to. She just had concerns regarding medical research in regards to herself. The saying goes that listening is a key to leadership. Suzanne Gordon explains in a BMJ Opinion article: “Research shows that hierarchy, by its very nature, dramatically reduces speaking up by those lower down in the pecking order. We are hard-wired, then socialized, to be acutely sensitive to power, and to work to avoid being seen as deficient in any way by those in power.[10]

A tweet concerning what patient empowerment is about also revealed how physicians misinterpret a well-informed patient and patient empowerment due to the hierarchical culture of healthcare: “Empowerment isn’t about bestowing one’s power on another. It’s education so they find their own power.” Team. Intake-Me retweeted @Intakeme

Another way of putting it more nicely concerning listening in healthcare is how Sharon Roman explains herself in the British Medical Journal: “While years of experience may make way for a knowledgeable doctor, years of listening help make a great one. I am aware that I may talk too much, but I also need to feel heard.”  There is more to it than this. Often a practitioner will think he/she has seen it all before. Sharon adds on: “Listen to what I have to say without preju­dice, not racing ahead to the answer you may or may not already know”. Sharon then explains patients have to be let to ask questions, even if the questions are no good, answer anyway[11].

I have been listening to stories in healthcare and listening still seems to be something that mostly happens by chance. Dr Alicia Conill shows a typical example of that when one of her patients takes her off guard by making her listen to her patient’s story. Dr Alicia Conill concludes on listening in healthcare that: “Listening to someone’s story costs less than expensive diagnostic testing but is key to healing and diagnosis”[12].

The biggest obstacle for a better culture of listening in healthcare is the hierarchical structure and how doctors are trained to have the status of a God. At times, it can even be worse than this be­cau­se this Godlike doctor does not even talk to the other semi-Gods in the healthcare setting or care to listen to when the patient explain why they need a certain treatment. This makes the doc­tor the same thing as an autocrat. The someone listened to. Not the listener. This is the oppo­site of what a culture of listening is about. I have read a patient story about exactly that when an anesthesiologist refused to listen even if there are national guidelines on how to proceed and it was exactly how the patient was explaining why the treatment she already was on was essential to her before surgery. The problem being the anesthesiologist was trying to remove it. The medical professional’s response went like this: “I am not going to let this happen – a patient is trying to tell me how I am supposed to do my job.”  The author Åsa Moberg who wrote about it called her article: Doctor’s prestige is lethal[13].

I want to focus on the most typical concepts used and the Sara Riggare blog entry put itcama hospital into place. The dichotomy patientcentric versus physciancentric. If you take a closer look and think about these definitions you should be able to see how narcissistic they both are. The idea or ideals of listening in healthcare need to be rethought and restructured in terms of communication struct­ures. Communication is still seen as speaking “which unfortunately is still a phallogocentric enterprise” according to reasoning on the practice of interlistening by Jaishikha Nautiyal in the Inter­national Journal of Listening demonstrates that since nobody listens to this it wrecks the cultural practice of listening itself. We need to make way for the Silent Other in the part of the listening process. Communication is a lost project. “And while speech thinks that it is whole and healthy, it does not realize that the denial of listening as a lost and melancholic object only thrives in the pathologies of speech. In sickness and in health: there is no speaking and thinking without liste­ning”. Patients are often interrupted within seconds. There is almost no room for them to voice their concerns properly. No time to stop and think and for the healthcare provider to really under­stand what good listening can do to enhance their own professionalism.  I have seen figures saying patients in Sweden get 18 seconds to explain themselves, in France 23 seconds and appa­rently in England as much as 54 seconds before they are interrupted. The act of listening is both an empathic and an ethic approach toward the Other. The problem in the healthcare culture in regar­ds to listening is that it is not seen as an active process. In traditional communication theories, lis­te­ning is excluded from the participatory dimensions of sensing in communicative experiences. “There is a homological pattern to the absence of listening from the academic discipline of com­munication that privileges speech acts and speech making”[14]. This is also typical of the culture of the west. This way of thinking mirrors democratic processes in the western school of thought. So, is a culture of listening in terms of democracy going to come from the East? Or am I just stuck in stereotypes…

.Dr Danielle Ofri explains from her book presentation on “What patients say, what doctors hear” that doctors do not wish to let patients voice their concerns properly because they think it will take too much time. A study she comments upon explains that patients do not really need as much time as doctor’s fear. The patient really needs something between one and a half minute and four minutes to explain themselves properly. She also adds on that doctors loathe informed patients. Even if the debates say they are for. Doctors prefer to work against this development[15]. The art of listening in healthcare has still a very long way to go. Some time ago Sara Riggare posted on Twitter that if she only did as her health provider said she would be worse off. Sara Riggare also added in that healthcare providers need to be more attentive to patient information needs. The fact that she is a successful patient is because she at least is listening to herself and making sure she is properly informed. No wonder people are all over the Internet, health apps and social media. The Internet always gives the impression of listening. The biggest truth of them all is that it is not a health professional who is the best listener. A fellow patient is often the one who best understands another patient’s needs. One just has to start hunting on different social media and find bloggers to realize how it all really works out. Being a listening officer on the Internet is mind blowing in this regard. Another example I can add in to make you, the reader, think a bit more is from when I a few years ago I read an article in The Language of Caring about a cancer specialist who herself was attained by cancer. She stated that it was first after being a patient herself that she truly understood what patients need to know. My question to this is: why does medical training not include this or even think it by itself? Why is medical education not teaching listening to patients? Today it is all still called communi­cation. How much can narrative medicine really help to turn the culture of healthcare into a listening one?

What do we actually need as a remedy against the non-listening culture in healthcare? The culture of listening is about openness and awareness. Still, maybe we need a managerial concept or policy of listening in healthcare. If we do not think about it before acting upon it nothing will change. Change can start bottom up or top down. The culture of healthcare needs a serious shift towards what the culture of listening is about. I am not sure it is going to work by itself from the bottom up.

Health policy, in general, is based on evidence-based medicine and founded on utilitarianism or egalitarianism and the values of clinicians are hopefully deontological. dishonest-patient-jpgThe last commitment is, according to Iona Heath, “poorly understood and little appreciated by policy makers, whose priorities relate to population or societal levels. Yet, without this foundation in deontology, patients would find themselves unable to trust clinicians, with less efficiency at societal level”[16].

There is a need to make way for change. A policy is needed since there also is a need to be able to evaluate. To begin, the deve­lo­pment of patient policy to make sure legislation and organizations act accor­ding to how a liste­ning policy that empowers patients and at the same time enhances professiona­lism of healthcare providers to become better listeners. The making of listening policy sculptured to align the patient experience in accordance with what modernized patient participation is. Patients need to be included in the making of listening policies. It is time to move beyond lip service on the art of listening in healthcare.

©Philippa Göranson, Lund, Sweden, March, 2017

References:

Dr Alicia Connell, www.npr.org/templates/story/story.php?storytold=100062673

Suzanne Gordon, blogs.bmj.com/bmj/2017/01/26/Suzanne-gordon-on-soliciting-input-not-just-listening

Dr Jerome Groopman, https://www.youtube.com/watch?v=j3XxS-p31qY

Dr Jerome Groopman, https://www.youtube.com/watch?v=h0AEGnQ0L5s

Dr Gavin Francis, https://aeon.co/essays/medicine-and-literature-two-treatments-of-the-human-condition

Iona Heath, http://www.bmj.com/content/355/bmj.i5705?utm_source=twitterfeed&utm_medium=twitter

P.C. Jersild, Mina Medicinska Memoarer, Albert Bonniers Förlag, Stockholm, 2006

Åsa Moberg, https://turtagning.wordpress.com/2015/11/08/lakares-prestigelystnad-kan-fa-dodlig-utgang

Myndigheten för Vårdanalys, www.vardanalys.se/Rapporter/2016/Varden-ur-befolkningens-perspektiv-2016–jamforelser-mellan-Sverige-och-tio-andra-lander

Jaishikha Nautiyal, www.tandfoline.com/doi/full/10.1080/10904018.2016.1149773

Dar Danielle Ofri, http://www.youtube.com/watch+v=mv0R2PXZHSQ

Sara Riggare, www.riggare.se/2017/02/18/patientcentrerad-eller-personcentrerad-vard-for-lakarcentrerade-patienter

Sharon Roman, blogs.bmj.com/bmj/2017/02/28/sharon-roman-notes-from-the-less-comfortable-chair

Tiffany Simms, https://tincture.io/when-once-upon-a-time-gives-us-more-than-a-story-f312734c2382#.5o7ttqfk0

Svenska Dagbladet, www.svd.se/sjukvarden-maste-kunna-lyssna-påa-patienterna

Wikipedia, https://en.wikipedia.org/wiki/Narrative_medicine

 

[1] http://www.bmj.com/content/355/bmj.i5705?utm_source=twitterfeed&utm_medium=twitter

[2] https://aeon.co/essays/medicine-and-literature-two-treatments-of-the-human-condition

[3] www.svd.se/sjukvarden-maste-kunna-lyssna-påa-patienterna

[4] www.vardanalys.se/Rapporter/2016/Varden-ur-befolkningens-perspektiv-2016–jamforelser-mellan-Sverige-och-tio-andra-lander

[5] https://tincture.io/when-once-upon-a-time-gives-us-more-than-a-story-f312734c2382#.5o7ttqfk0

[6] https://en.wikipedia.org/wiki/Narrative_medicine

[7] P.C. Jersild, Mina Medicinska Memoarer, Albert Bonniers Förlag, Stockholm, 2006

[8] https://www.youtube.com/watch?v=j3XxS-p31qY & https://www.youtube.com/watch?v=h0AEGnQ0L5s

[9] www.riggare.se/2017/02/18/patientcentrerad-eller-personcentrerad-vard-for-lakarcentrerade-patienter

[10] blogs.bmj.com/bmj/2017/01/26/Suzanne-gordon-on-soliciting-input-not-just-listening

[11] blogs.bmj.com/bmj/2017/02/28/sharon-roman-notes-from-the-less-comfortable-chair

[12] www.npr.org/templates/story/story.php?storytold=100062673

[13] https://turtagning.wordpress.com/2015/11/08/lakares-prestigelystnad-kan-fa-dodlig-utgang

[14] www.tandfoline.com/doi/full/10.1080/10904018.2016.1149773

[15] http://www.youtube.com/watch+v=mv0R2PXZHSQ

[16] http://www.bmj.com/content/355/bmj.i5705?utm_source=twitterfeed&utm_medium=twitter

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We have sexual education, but not reproductive education: approach from an humanisation perspective

Bionews recently published a letter from a British teenager in which she pointed out – from a subjective point of view – the necessity of reproductive education at schools. She said to receive sexual education with a clear: “don’t have unprotected sex: you may risk an unwanted pregnancy, a sexually transmitted disease or even both”, and adds “this message, however, ignores many important aspects of sexual and reproductive health”.

I agree with all her statements. Working on Patient Experience in the sector of reproductive medicine has always given me the possibility to talk with a lot of patients that have one thing in

common: they all need a fertility treatment due to their age. They have always put their work first and thought that getting pregnant would actually be easy. Another key factor is the so called biological clock. In this regard the author of the letter states that “fertility doesn’t simply fall from the sky from one day to another, but there are several factors that can hamper reproduction, even before the age of 35”.

Whenever I stated in private that they nowadays teach us how not to have children instead of how to have children – because of the beliefs that conceiving children is reduced to sex – at some point I even was told that those “where ideas created by Ratzinger”. I think this is why I liked this teenager’s letter and why I am so glad that such a young person raised this point.

If sexual education contributed to the liberation of women in the past, nowadays it threatens to lock them up in room. It is thus necessary to promote a reproductive education that can help making crucial decisions, not only regarding children, but also regarding what kind of work and labour relations we actually want.

The social meaning of reproduction
Our idea of children and reproduction has changed considerably since the appearance of contraceptives, in fact, it is no casualty that these methods appear amidst the counter-cultural conflict against patriarchal roles that link reproduction and parenting exclusively to the woman.

anticonceptivosWe must not lose sight that this process coincides in time with another major process: the incorporation of women into wage work as a mean for households to access consumer products only affordable for families with more than one income. This massive incorporation to work has certainly been a key element to achieve more equal relationships, family and social relations.

However, most companies have perceived the fact that women have children as a problem ever since. They have put many obstacles to reproduction: layoffs, difficulties in recruitment, career development obstacles… so many, it was necessary to legislate the raising corporate sexism: maternity leave, lactation permits, reconciliation policies, etc. Some years ago, in the automotive company I used to work for, I proposed the person I considered to be the ideal candidate for promotion to which I got the answer “forget it, she has children and will not do extra hours”

Hence, from a social perspective, reproduction can be seen as an objective economic problem for women who want to pursue a professional career; furthermore, the image of a young mother is still related to the 60’ housewives.

Medicalisation of sex and pregnancy
There is a real and objective difficulty in becoming mother before the age of 35 – 40 due to the professional issues of having children before the age of 30. Not to mention the social issues, as a young mothers or parents are automatically associated with values from a time in which women were subordinate to a family role.

Although we think we are free to make crucial decisions regarding parenting, in practice there is such great social constraint that the fertility rate continues to decrease in Western countries (also in Asia and South America) to the point of having reversed the demographic pyramid.familiy discrimination

In fact, at the Master’s Degree on Human Fertility of the University of Alicante and IVF-Spain and the joint conferences of both institutions to raise awareness onreproductive health, students manifest in most cases their desire of becoming mothers at the age of 30-35, but are unaware of the wear the ovarian reserve suffers, as well as of other problems associated with fertility.

Assisted reproduction was originally conceived for treating the blockage of the fallopian tubes, but in almost 40 years of existence it has become the solution for all women and couples that focused on their careers. At IVF-SPAIN, more than 80% of women undergo treatment due to advanced age and only a small group undergoes a fertility treatment due to medical reasons. As a fertility clinic specialised in such cases our data is biased, but colleagues from other clinics confirm a percentage between 50% and 70%.

Apple and Facebook currently offer to pay for their employees to preserve their eggs (a technique originally conceived for women undergoing chemotherapy) and to delay motherhood. This is definitively a step in the wrong direction as it hinders reproduction and obliges them to put corporate interests in first place.

Infertility has become a social illness. Moreover, we can actually speak of a cultural factor, as in the financial capitalist societies we live in corporations are the actual creators of culture. These corporations create the values we internalise, as seen in the last post  as described by Richard Sennett and trhe oocyte conservation for female workers shows.  Thus a “structure of feelings” is created, as defined by Raymond Williams out of which we cannot think and feel.

In our culture being efficient and productive is well above other values such as friendship or family, as rightly observed by the Korean philosopher Byung-Chul Han in “Fatigue Society” and the Agonia del eros-Edit-2“Transparency Society”. These late capitalist values have been interiorised up to a point where, according to Han, we exploit ourselves without the need of a third party. It is no casualty Han also wrote about the “Agony of the Eros” and how the purchase of goods has replaced love and seduction. In the end, reproduction has its origin in the Eros and we have subordinated it to productivity and consumption.

In the end, economic freedom has proven to be a trap that has taken away reproductive freedom. For couples, conception has become a big technological uterus, where the mysteries of life, as well as affection and intimacy in sexual relations give way to hormone treatment, precise technological processes and embryo cultures.

Reproductive education
Can we talk of dehumanized reproduction? Medicalised reproduction not necessarily implies a dehumanized reproductive process, as long as the couple undergoing treatment has the support of family and friends, and if the clinic is patient-centered and not a technological factory. What dehumanises reproduction is its subordination to the consumption of goods and efficiency.

discimination-against-family-responsibilitiesTo reverse this situation it is thus necessary – as appropriately pointed out in the letter to Bionews – to receive an adequate and solid reproductive and sexual education. In first place because when being aware of the fragility and reproductive constraints of both men and women (40% of treatments are due to a male factor), people will have the necessary information to take more accurate decisions regarding their future professional career; they will also be able to claim a better balancing of work and family life, etc.

Secondly, we need to consider the costs of the model for labour relations. We know it creates poor quality employment; we know it goes against the country’s competitiveness; however, it is also causing a severe demographic reduction and consequently the ageing of the country’s population.

Ultimately, a solid reproductive education (including the aforementioned social and labour aspects) would erase the conception of motherhood being old-fashioned, and give women and couples the freedom to choose when they actually want to form a family.

Patient centeredness: humanisation of assisted reproduction
When we talk about the humanisation of reproduction, we do not exactly mean, as customary in previous posts, to put the patient at the centre (of assistance), but rather to let the patient make decisions regarding their reproduction, relationship, family and work. What can assisted reproduction clinics do in this regard?

Assisted reproduction centers practice a quite humanised medicine despite their great technological arsenal (as private clinics they must fight for every single patient). Boutique clinics on one other hand provide personalised attention; large clinic groups offer more depersonalised, however not necessarily dehumanised medicine.

On the contrary,  thanks to reproductive medicine, many people who previously were not able to form a family due to biological or social reasons now can do so (single women or gay couples). It can be said that without reproductive medicine, the actual and new family models would not be so widespread. Additionally, reproductive medicine can help to preserve fertility and of people suffering diseases, such as cancer or lupus.

But beyond making reproductive techniques available for people or groups who could not access motherhood or parenthood, there are several things reproduction clinics can do create a more individual-centered society.

Patient centeredness is fine, but whenever taking care of professional staff
According to the Beryl Institute true patient experience lies within the professional personnel who attend the patients at the clinic. This means that should the professional staff not be given i am the patient experienceadequate working conditions, then the clinic’s patient experience will lack in quality. Thus, the clinics must provide and ensure decent working conditions, as well as to facilitate and support its employees’ decision towards patients.

Business, but not commercial exploitation
Reproductive clinics are mostly private and there is nothing wrong with that; however, we must set limits. In the previous post we mentioned that both public and private healthcare systems are not consumer items and that not considering them as such is what differences a business from a commercial exploitation. But, who am I to ask a patient if she is preserving her fertility due to health issues or due to her job? Or even to judge if she made the right decision? Nevertheless, as a clinic it is up to me to search (or not) for that patient profile.

Reproductive education
Fertility clinics play a key role at this point. With a 15% of infertile couples (2% of them attending fertility clinics), we can conclude that this market is big enough to not encourage women and couples to postpone motherhood/parenthood. The dissemination of knowledge at schools and universities, as well as on blogs and social networks could complement sexual education already taught at schools. In addition, educating youth with honesty and helping them to freely make a decision regarding their reproduction by means of information will be of great benefit. Sooner or later those 15% of girls and boys who received that will suffer from some kind of fertility problem. Which fertility will they choose in the end? I would opt for the patient centered clinic that cared for me when it had nothing to win.


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Why healthcare is not consumption – also not in private medicine

4-Star-RatingI have been following for a time the debate in the US about Medicare’s Project in order that patients can rate a hospitals quality by a star rating system, like the one used by Trip Advisor. From a European perspective this might be perceived as something American and somehow distant. For Americans it has become reality, but even for Europeans my feeling it is that this measure is a step more towards the transformation of patients into consumers, which is typical for private healthcare providers, but not only.

As this blog’s readers know I work for a private fertility clinic and I am proud of it. Yet neither the clinic nor myself share the vision of the patient as a customer. We attended the recent IMTJ congress on health tourism in Madrid. Speakers kept on insisting that patients are becoming consumers and that this was a global tendency. Even my clinic’s marketing director was enthusiastic about the idea and we had to cool her enthusiasm down.

Who is promoting consumerism among patients? For instance IMTJ itself that has a concept of medical tourism like a 5 star hotel with an OP room because it sells touristic services around a treatment. And these services are sold with marketing strategies that are symbolically related to vacation: comfort, service, a time that is free of worries and experiences that are opposed to day to day life, whether relaxing or exciting.

The big healthcare corporations try to transform medicine into a commodity, the patient into a consumer and the physician-patient-relationship into a customer-provider relationship. Not by chance these corporations are owned mostly by finance capital. We already saw in another post how there are two kinds of capitalism in healthcare: financial capitalism and traditional capitalism (family or not family businesses).

Financial capitalism prioritizes financial results above any other questions. This is why it spends huge sums in marketing with the goal of seducing the patients or compensating a poorer care.

En el primero los resultados se anteponen al paciente y por eso gastan grandes cantidades en marketing, con el fin de seducir a los pacientes. En el segundo el resultado también importa, pero la relación con el paciente es cercana, está gestionada por el médico y no por los expertos del marketing experiencial.

Customer experience is not the same as patient experience
Of course it is very legitimate to use tourism services in order to make the patient feel better when he is abroad or in healhcare consumerismorder to make your hospital more attractive. Yet this does not transform a patient into a customer. Somebody who comes for instance for a knee operation can be a customer during the trip and the accommodation part of the treatment. Then he would be the king, according to the marketing guys. But once he crosses to the therapeutic space he is no longer the king: he is the centre but not the king. The difference is huge: the king commands because he pays. The patient is the centre whether he pays or not. We do not talk about a business, we talk about a life.

Customer experience is built in order to produce satisfaction and make the customer come back and recommend a product or service. It aims to satisfy his needs, generally leisure and pleasant needs in the case of tourism. Patient experience is aimed to heal. We are not in front of pleasant feelings, but mainly in front of death, uncertainty, fear and pain.

Patient is the centre, but not King
cleveland PEXAccording to the Cleveland Clinic, possibly the reference hospital in patient experience, to be in the centre is not about to be satisfied, but about making the correct things for a patient. We want the patient to recover the best and quickest way possible, from a perspective that takes into account all dimensions: biological, psychological, social, cultural and spiritual. If with this work we manage that he recommends our hospital or comes back if he needs … this is the consequence of a good job, not the result of an emotional marketing strategy.

Capitalism in healthcare and the corrosion of character
Possibly this reflection on patient consumerism comes because a British patient that called recently to the clinic and was angry with her physician. The patient 47 years old, is single and wishes to become a mother. She is angry because the clinic does not give her a date for an embryo transfer, since her endometrium is not thick enough. Yet, during the mock cycle the endometrium responded perfectly, but then it did not do so.

I will reconstruct the conversation according to the information given to me by the physician:

– Patient: “why has my endometrium not reached again its initial thickness?”
– Physician: “we followed the protocol, but apparently the endometrium has not responded to medication. We can try a different dose.”
– Patient: “I am already 47 years old and I do not have time to try different things. I had my pregnancy programmed for June”
– Physician: “medicine is unfortunately not an exact science. We base on scientific evidence, but evidence talks about probabilities. Sadly you are among those 12% of people where medication does not produce the desired effect. I feel very frustrated too and I can only tell you that we need to try different dosages or may be ad an additional drug until your endometrium responds.”
– Patient: “I do not have time for adjustments and regular ultrasound checks: I have a lot of work and I have to train hard”.

As can be seen, the patient demands two things that are important to her. On one side, to achieve a pregnancy when and how she wishes. On the other side, she wants to have the control over time and bend a higher goal –to have a baby- to her ordinary work and sport habits.

Here we find two classical elements of capitalism. The first one comes from marketing in its version of customer presión laboralexperience, where the client king commands: “I paid for a service and you have to deliver it as I wish”. But a body is not a machine and a fertility treatment is not a customer-provider service.

The second element is efficiency. This patient sets her production goals over he reproduction goals. She might be not that different to the majority of Western women …that are young! To postpone maternity has become the norm. But the patient, as she stresses out, is 47 years old. Her baby is so important to her that she is even ready to have it without a couple. Yet she is not able to get out of her mental scheme of efficiency and productivity and thus she prioritizes her higher goal bellow her lower goal.

Other patients try to bargain their treatment, True that a fertility treatment is expensive and that many people get indebted because of a treatment. But the point is not the money, but the way the relate money to the treatment, which follow also a capitalist customer-provider scheme, we do not follow at IVF-SPAIN: customer loyalty by discounts, offers and promotions, bargaining by threatening to go to competition etc. At the end of the day, we are talking about money amounts that are often lower than a car, a material object that loses value. If one compares a car purchase with all what a child means in the life of his parents there is something wrong when some people put a treatment in the same category as a car purchase.

Sennett englissPatients trapped in time-productivity-efficiency schemes, parents commodifying their children… we are meeting clear examples of what Richard Sennett calls “the corrosion of character”. Senett describes how in financial capitalism or flexible capitalism insecurity and uncertainty about the makes the individuals integrate into their character in way they are unaware of the values corporations demand like productivity or efficiency. Sennett wrote his book before the digital era; if we are sincere with ourselves we will discover that Sennett’s thesis applies also to ourselves: who has not answered to mails late in the night and how many people can allow themselves to separate their working time from their persona time?

What to do
We see that the tendency towards patient consumerism is not only fostered by the marketing of big biomedical companies, but that many times patients themselves are behaving already as consumers; not because they pay for private healthcare, but because they establish customer-provider relationships with medical institutions and healthcare professionals. We saw already in the case of Osteoporosis that at least in Europe treating patients as customers does not always work well.

From the perspective of private healthcare I believe it is very important to keep medical and human values high without letting tendencies of financial capital infect us. It is key in that sense:

  • Have a medical management
  • Foster a patient centred organization
  • Impulse humanization
  • Focus on patient experience and not on patient satisfaction (only)
  • Hire a patient experience officer

Private healthcare can be a business and at the same time be true to strong values that can differentiate it from financial corporations. In order to meet both goals it is possible –from a purely business point of view- to keep in mind following aspects:

  • Commercial strategies that are patient centred, not consumer centred
  • A balanced marketing budget: we want to gain patients, not to compensate failures owed to a focus on financial indicators
  • High margins are OK, but do not subordinate all to financial metrics
  • Healthcare professionals are the patient experiences: dignified work conditions and advanced HR policies
  • Reinvest in R&D and innovation and engage patients in innovation policies.

In out next post we will see the positive consequences of a good human resource and talent management on patient experience. Until then I wish you a happy summer.

summer 2


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Patient Experience in Fertility 2: practical examples on how to apply it to clinical practice

The latest post described how important patient experience is in fertility in contrast to the small amount of research done in the field. We promised to describe examples from clinical practice on how to improve patient experience and by that achieve significant impacts for patients and the organization.

May be it is not very modest to start with one’s organisation and one’s work. But I cannot help to feel very proud about what has been achieved at IVF-SPAIN, which not by chance is one of the fertility clinics with highest certified pregnancy rates in Europe and also one of the most innovative. Possibly only huge groups like Genea in Australia with its development of fertility automation technologies like vitrification automation, as well as its and own consulting company and IVI Group with its subsidiary Igenomix have gone further in R&D and technology development than this midsized clinic in Alicante.

Meaningful relationships
Because it is certainly not modest to start with my own organization, IContext-1 want to highlight first the project of Aliza Gold done at RMA Texas in 2013. The full case can be read at this slideshare presentation. I like this particular project because it applies a use
r centred approach. They first acknowledged the highly emotional aspect of fertility treatments. Then the made an ethnographic immersion into the clinic, becoming embedded with staff and acquainted with processes in order to find out what is the real patient journey as well as all patient-staff interactions. The solutions concentrated in creating meaningful relationships with a coaching services for one to one interactions, as well as dedicated care teams.

The case of IVF-SPAIN was a radically different one, since its founder Dr Aizpurua was very conscious about the importance of meaningful relationships and patient centricity from its very beginning. For instance dedicated care teams and one to one interaction protocols were part from the clinic from the first day. What it did not have was a proper system to really listen to patients, manage patient insights and engage patients in co-design, decision making.

stress fertility

Fertility patients need a to be actively listened

How to listen to patients
Listening to patients is not the work of the quality and patient experience manager. It is the work of every single employee. The PXO has to create the right culture and ensure the proper training, so that each employee can be an active listener and work within the continuous improvement system to transform the gained insights into a better patient experience or even innovation. This way of working has produced at IVF-SPAIN following improvements of patient experience:

Mitigate the egg donation shock: Many patients –specially form Germany and Switzerland- come to IVF-SPAIN directly for egg donation, since it is allowed in Spain, but not in those countries. Yet, many come for traditional in vitro fertilization (IVF) and from those, a significant number gets an indication for egg donation, mainly due to age, but also due to ovarian reserve, high aneuploidies, etc. One third gets a shock when they learn that their offspring will not be a direct descent and genetically related to them. Often they do not express this shock or fear to the physician. But they break down when the assistant comes to them after consultation.

Most fears resembling genetic kinship are not so much related to physical appearance or IQ (although genetic determinism is very powerful), but on emotional questions: will the child love me the same, will I love the child the same, will the child be healthy compared to “normal” kids… those are the most common worries. Worries coming from genetic determinism believes are related to the question “will there be something of me in the child?”

As a team we have worked on this problem and developed:

  • A communication and counselling strategy for the assistants for meaningfull conversations with patients on the topic.
  • An information kit for patients with an easy resume of evidence scientific evidence of emotional development of egg donation children, following guidelines of the Spanish Fertility Society.
  • If they need in depth information, a resume of relevant articles on the issue.
  • For those that insist on genetic resemblance despite all the previous counselling and information, use of 500 ancestral genes on the Recombine array to determine genetic kinship with the donor.

Smooth and comprehensive first consultation: In the last post I stated that daily needs

IVF ARQUITECT 1

At IVF-SPAIN protocols, processes and technologies include patient co-design

require strong PX approaches. A good example is the first time a couple has medical consultation regarding fertility problems. The patient journey map has showed a complex setting of feelings: fear not being able to conceive, fear about what is the treatment about with all its complexity and need of medication (most needed to be injected, another source of fear), economic uncertainty, since treatments are expensive, the already described fear of not having a genetic link to the baby, anxiety, sadness, social stigma, identity problems (self-image as a woman or as a man, when not able to conceive) and many others. In the case of IVF-SPAIN, 95% of patients are from abroad, so that they are in a strange country and have less sense of familiarity and control. That doctors, nurses and assistants speak German and English mitigates this feeling in the clinic, but not outside.

In such an emotional state, many patients possibly miss over 60% of the information, information that is not only purely medical: embryology, genetics and pharmacology are part of the issues a couple needs to understand. Also other complex issues, like immunological or sperm tests, endometrial receptivity as well as the complex procedure of egg donor management. There are also many informed consents to sign as well as legal requirements, not to talk about ethical questions; some couples try to conceive when they are over 50 years old, others try to convince doctors for sex selection, etc.; and reasons for denial of these wishes must be well explained. Last but not least, all this information has a financial side and it is often difficult to understand the cost structure of a treatment; it is not rare that patients suspect the clinic of overselling.

The combination of feelings of insecurity together with overload of information –possibly heard for the first time or read from internet without resources for assimilation- can produce emotional reactions that go from silence to anger and they are often not expressed within the clinic. They slash back as complaints may be months later and the important question is not the complaint, but that may be a little error unleashes strong emotions that have been loading up over time.

For this reason it is very important that this first consultation is designed so that step by step fears can be lowered and information is also given step by step in doses that patients can assume gradually the knowledge. The co-desgned protocol also helps to create the right mindset for those people unfamiliar with reproduction.

journey fertilitySurveys are good, but not enough
At IVF-SPAIN we have a patient satisfaction survey, like most clinics. It is a survey that follows the recommendations of the patient-centeredness questionnaire-infertility (PCQ-infertility, see Article by van Emple and Kremer). Yet, if we aim for patient experience instead of patient satisfaction, then the survey is not enough. It is not so much important to know that satisfaction decreased by 5% at a given point, but rather that we can see at which part of the journey and what exactly happened. If we wait to have statistical significance it is too late. Therefore we monitor weekly the survey tendencies and pay special attention to the qualitative comments.

Complaints come only from very angry patients, and these are really under 2%. So, monitoring qualitative comments has been key for to improve patient experience by:

  • Allowing doctors more time for preparation
  • Design clearer medication plans
  • Create a quieter environment at reception
  • Manage better medical and economic expectations

Patient insights for strategy
Patient experience is a key strategic asset. For instance, we noticed that at internet forums, German and British patients were expressed their doubts that egg donors in Spain would be suitable due to dark skin and hair and therefore thought that Czech Republic would be a better option than Spain. German anthropologist Sven Bergmann found similar results in his research and explains that patients assume wrongly a correspondence between  ethnic background and nation.We could also simply about racial prejudice.

As a result, a research on the ethnic composition of the province Alicante was undertaken, including also national origins of female students at Alicante universities. Results should not be surprising given the fact that Alicante is home to many European residents: over 20% of the target population is of British, central, Nordic and eastern European origin. The research was published in several fertility magazines for patients. The information is also included in the communication assistants and doctors offer to the patients.

An ethnographic approach as well as a statistical analysis of complaints have shown that patients from different nationalities tend to assign a different value to money. For instance, Dutch patients tend to have a very rational relationship with money clearly linked to a “give and take” mental scheme. To the contrary, Germans tend to assign emotional and affective values to money, while British patients tend to see money as a value in itself. This has led to different pricing approaches by nationality with good results. Money is a part of the patient experience in private medicine.

Patient engagement and technological innovation
Process and technology co-design are very important for patient acceptance. For examplepatients were involved in the design of IT systems at the early stages of IVF-SPAIN, when

medical technology

User acceptance of medical tecnology increases with PX approaches

there were no resources for commercial solutions. These patient co-designed systems were soon outweighed by the clinic’s growth and they had to be changed by commercial solutions. When patient co-designed systems have been substituted by commercial standard or tailored systems, the result has been always suboptimal. As a result, IVF-SPAIN develops now its own IT systems based on patient insights.

A similar approach was used with the preconcpetional test Recombine and patkient acceptance increased dramatically.

Tools needed for managing patient experience in fertility clinics
From the IVF-SPAIN experience, there are several tools that are very useful in order in engage patients and design better experiences, protocols, processes and technologies:

  • Empathy map: a first approach to make employees to get in patients’ shoes
  • Patient experience map: a key instrument that identifies all touch points and the emotions linked to interactions
  • Co-creation and co-design: it is not always easy with ambulant and foreign patients, but increase of acceptance pays off
  • Design thinking: helps to design, prototype and test including the patient’s experience
  • Ethnography: how to  identify insights, unveil relationships and discover meanings. A first qualitative step that unbereable for qualitiative research
  • Action research: a strategy that allows systematic reflection and creates practical outcomes

Next challenge: patient empowerment
Patient empowerment is born out of the increase of chronic diseases. Patients that are able to manage their disease and co-decide use less medical resources and need less medical visits. Fertility patients are said not to be chronic patients nor is infertility really considered a disease.

Yet, this is not completely true. Many patients spend years trying to achieve a pregnancy. For many it has become a way of living for a couple of years and even a form of identity, as Sarah Franklin argues in “Biological Relatives”. True, they will not live their whole lives with as fertility patients, but many invest two, three or four years. During this adventure they really become expert patients.

They have all the requirements to become empowered patients. This is now our challenge.


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Patient Experience in Fertility 1: Conclusions of Eshre 2016

On Wednesday july 6th this year’s conference of the European Society of Human Reproduction and Embriology (ESHRE) closed successfully its 2016 edition in Helsinki. As a medical congress, it is natural that most of the over 300 lectures dealt with medical, surgical, embryology and genetic issues. Yet the total amount of lectures dealing with patient issues was disappointing:  7, of which 5 were about the psychological stress related typically to fertility patients; a traditional field in human reproduction.

Not much research on patient experience in fertility
Although literature on patient experience is abundant, in the case of fertility it is true that not much attention has been devoted to the question. Between 2004 and 2014, the number

Diapositiva1

 

Source: Pubmed

 

of medical publications on patient experience has doubled, reaching a 6% growth yearly sin the field of human reproduction the growth curve has been very irregular, although the number of articles also doubles since 2004, but in a far more sudden way than in medicine in general. This indicates that the question appears possibly because it is “in fashion” in medicine, but then drops radically, to regain interest again. In any case, proportionally 70 articles a year compared to the total amount of articles in fertility (4.256 in 2014) is a very low number (2%) compared to the proportion of PX articles compared to 18.000 compared to 276.000 articles in medicine in 2014 (7%).

Diapositiva1

 

Source: Pubmed

 

As already stated, a significant part of literature deals with the psychological stress of IVF patients, a question that is very specific to the sector. There are also many interesting studies around the experience with ethically controversial questions of assisted reproduction, like surrogacy, egg or embryo donation, as well as donor anonymity.

Daily needs of patients require strong PX approaches
Yet if I think on my daily work as quality and patient experience manager at IVF-SPAIN there is no single day where the importance on working on patient experience is not highlighted: patients that have may be six or seven failure cycles behind them, parents that have lost a child, couples that suffer from social stigma due to the lack of children. People that need more than protocols, process or more than a patient journey. People that need that we invent every day clinical, procedural, design and human responses to such a wide range of needs, that they cannot be driven form an algorithm. They rather need an engaged staff able to create every day new solutions for them.  And to the contrary, we meet a very few, but very loud, number of patients, that try to abuse or take advantage and that need also ways to bring them down to an ordered flow.

embriólogos

 

IVF is very technological and needs lots of patient centered communication

 

This is why I wonder that literature about patient experience in fertility is comparatively seldom. For instance, at many clinics patients walk into the medical consultation, they go through a series of medical tests, they are given a treatment plan and walk out; without understanding very well what is happening or the effects of the medication they are taking in their daily life. If they are recommended an egg donation cycle, many break down, but not in front of the doctor, but when they leave consultation. The fact that the child will not be genetically theirs is a shock and they have no opportunity to have a meaningful conversation where somebody explains them that there is no difference in love and development with genetical offspring.

Four meaningful points
An article by Wilkes, Hall et al researched at primary care shows already at 2009 a map

pregnncy test disappointment

 

Fertility is emotionally stressfull

 

with the meaningful points for IVF patients that are patient autonomy, personal relationships, professional relationships and access to services. Autonomy is important for sense of control for decision making processes. Personal relationships have to do with social isolation, guilt and the image of the couple in front of family and friends. Professional relationships have to do with something as important as trust and access to service with a good delivery of service, which is the only of all four points that most satisfaction surveys value. How many procedures and protocols deal with autonomy, personal relationships or professional relationships? If you are not aware of it, surely  not many.

Context and meanings matter
Surveys do not always reflect the full complexity and the psychological as well social meanings of patient experience. An example is the excellent study by Lavery, Barri et al at Hammersmith Hospital London and Dexeus Clinic in Barcelona about the experience of preimplantation genetic diagnosis (PGD). The study is based on 36 answered questionnaires (from 67 sent), representing 36 couples that underwent 79 PGD cycles. The study divided the couples in those that had already an affected child or family member, a diagnosis or a pregnancy termination due to a genetic disorder. The study focuses on the perceived advantages and disadvantages of PGD as well, as well as comparing PGD with other diagnosis methods.

Obviously studies must focus on very specific questions, but in the literature I find almost all studies focus on statistical points of patient experience in PGD, but I miss what a genetic disorder means for a family in terms of suffering, logistics, stigma, burden, etc. as well as, the fears about genetics hat raise often among patients, like this excellent article by Ruth Fitzgerald show. Although done in 2002, analysing newer patient experience in PGD literature (Derks-Smeets et al 2014 or Hens et al 2013) study patterns have not changed.

journey fertility

 

Fertility journeys are not as smooth as marketing represent

 

In other words, context and meanings are key to patient experience and pure statistical approaches leave a lot of important points out that could improve patient experience, as the work done at IVF-SPAIN in the case of Recombine preconceptional genetic screening shows (see post). To what extent this part of the experience is misunderstood is showed by this study by Van Empel et al (2011) that shows that often fertility patients are ready to trade clinical results for a better patient experience. In this study, the context is taken into account and of course this is not in conflict with a good quantitative approach.

A good example of introducing insights gained by analysing context is this work by Marcia Inhorn, where she is able to define reproductive tourism as reproductive exile thanks to a good context understanding.

Practical applications
Possibly the best approach to patient experience in human reproduction is undertaken by Jan Kremer, who has dedicated 29 of his 85 publications to questions of patient experience, not as as a researcher, but as an innovator in the fields of patient empowerment, with the use of patient e-communities and wikis or the development of indicators for patient centeredness in fertility.

I like professor Kremer’s approach for the practical orientation of his work: research about patient experience? Yes, but to improve patient experience and make the lives of people seeking a child better.

How can we apply all this learnings about patient experience in practice? The next post will deal with practical examples of clinical practice. Until then the master in human fertility at the University Alicante –developed together with IVF-SPAIN- offers a subject in patient experience in its second edition that is already open for inscription.


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I CONGRESS OF PATIENT EXPERIENCE REWIEW

On June 17th more than 110 particiants (25% more than registered) attended the First Patient Experience Congress in Spain, organizaed by the Institute for Patient Experience. The event – supported by Mondragon Health and enterprises from the Mondragon Cooperative Group, the FIPSE Foundation, Merck and Disser – soon became trending topic on twitter with more than 300.000 impacts. 
For sure a paticipant’s voice will describe better the content’s of the congress, since as co-organizator I am biased. This is why I asked Estefanía Arribas, nurse, trainer and researcher at the University Valladolid, to write this post.
Estefania Arribas Leal is considered, curious, creative and transformative. As a clinical nurse she has worked in multiple health care settings in Spain and the UK. She  also worked as complaint manager and clinical consultant in quality departments.  

I CONGRESS OF PATIENT EXPERIENCE REWIEW

FOTO ESTEFANIA ARRIBASBy Estefanía Arribas Leal

Every congress is born out of a series of conversations between people interested in its celebration. Then they begin to share responsibilities, make endless to do lists, set up meetings, send emails, contact potential speakers… The work of organizing a congress is huge. Those who have ever done, they know. For the Institute for Patient Experience all these efforts were materialized on June 17th 2016, when the earlier guests began to arrive and the first posters started seeking their space on the walls of the accreditation room. From the first moment, guests began to greet after recognizing each other and we could feel the joyful expectation that happens when you know you’re about to share an exceptional moment. For exceptional is participating in this first Congress created with all the interest and the desire to share something good. For this purpose, all efforts, all the professionalism and good work of the organizers were worth enough.

First of all, we enjoyed Glenn Laverack, an expert in health promotion and advisor to the WHO, with the lecture tittlecongreso general “The role of patient activism”. Glenn shared with us his thoughts on patient empowerment and deepened the idea of patients and organizations health activism to change systems. Glenn conveyed that activism does not have to be accompanied by negative prejudices. It is positive when helps to improve systems with strength and determination. We cannot only rely on governments to improve things we do not like, Glenn said. Nor personal action is sufficient. It is patient control and the power of raise their voice through collective participation the engine that allows the systems real change. Patient voice joins in small groups forming organizations and alliances. Those groups, more organized, then have capacity for changing the system. An example of this idea is the Mad Pride movement, in which former patients around the world are working to reduce the stigma of mental illness. In question time, kindly answered by Glenn, we were hearing also interesting reflections by a passionate audience which made a day start very stimulating. All questions revolved around concepts that later would be repeated: the patient’s voice and collective action for social and political change.

ClYbWhGUkAA8vLySome of the ideas raised through the congress were the need to give the patient the ability to be represented in the institutions, “You cannot guarantee the sustainability of the NHS if the patient does not have the option to make itself listen”. Patients associative movement should be professionalized to allow their representatives greater and more complete dedication. There is a growing need for patient associations to find financing systems in order to become spokespersons of these institutions.

Patient’s voice
We cannot forget that patients are also an exceptional and “cheap” resource, which transmit something that experts cannot convey: the passion of the lived experience. With the widespread of social media, social networks are helping patients to be more active, to meet each other and actively communicate with society. But moreover, patients must be trained to be effective institutional partners. Some Universities and educational centres are already working in landing training programs to provide formal skills and competences to develop this seek patient and health carers expertise.

Patient centered design
On other hand, talking about using models of excellence at health centres, we could find multiple benefits of those DSC_1394okmodel when focuses its efforts on improving every days’ patient and families experience. We were talking about the importance of re-create the future of health care with patient participation, involving them in management decisions by creating patient committees who meet regularly and share health centre management. It will be key to include the user in the flow of redesign the health services, focusing the issues from the user point of view, allowing them to add value and improve health indicators. The epatient or empowered patient is seeking actively to manage its health. Empower patients use Internet to find reliable information and support from other patients in similar circumstances. Individuals want more and more to be involved in making its own health decisions. Some health systems have already programs to increase and facilitate this option.

Humanization
In order to have a more humanized health, we need to surpass the old medical model stating “everything for the patient, but without the patient”. It is also important connecting and increase the empathy with patients and their families. Patient expects to be cared for not only the physical but also the emotional aspects. When caring for their emotions, the prognosis of patients improves. Humanize health means also to inform and empower patients to self-care. A clear example of empowered patient is patients with rare illness. For them, to be empower is not just an option, but the only option itself. In order to improve the attention to people and their families we only need to ask: what you need? and actively listen to them.

Participatory patient workshops
In the evening, after lunch, participants were divided into groups to attend one of the three participatory workshops organized with the aim to work in small groups, invited participants to take action by putting the focus on the patient experience strategies. The workshops organized were: “Avoiding the rate of technological failure: patient-centred innovation”, “Listening to the patient to improve your experience” and “Improving customer experience health insurance” It really impresses to see the valid ideas that people are able to offer when they get to work together.

Beryl Institute
Finally, we hear the closing conference entitled “Patient experience: a growing overall movement”, via Internet. The conference was conducted by Jason Wolf, President of Beryl Institute, from Bedford, Texas (USA). We could all grasp the strength of the message of one of the greatest exponents on the study of the importance and impact of patient experience worldwide. His words did not leave anyone indifferent and his speech was very inspiring for all of us: “Real change begins with the simple act of people talking about what matters to them.”

Best patient initiative award
Finally, before closing Congress, best poster award presented to the Congress was given to Psoriasis Network, BeFunky Collage3awarding its initiative for the creation and dissemination of audiovisual content related to the world of psoriasis and psoriatic arthritis, a work developed from the encounter between students, artists and patients with psoriasis and psoriatic arthritis. The poster was entitled “Program “MeetingDoc-psoriasis” of filmmaking on psoriasis and psoriatic arthritis”. To end a busy day, full of interesting information and initiatives focused on the patient, Carlos Bezos, on behalf of the entire Institute for Patient Experience team thanked attendees and speakers and closed an event that will mark the agenda of this global movement, of the patient experience, unstoppable.

 


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A patient’s credo

It is a long time I have not written in English in this blog and I feel it is time again to come back to this 25% of readers from the UK and the US. Recently I read a wonderful prayer by Timothy Lent, lecturer in Medical Ethics at the Immaculato University. Philipa Göranson, Swedish researcher for patient engagement drove my attention on the prayer.

I found it very inspiring and would love to share it.

I am a patient 
and a patient is,
first and foremost,
a person.

The physicians and nurses who take care of me are also personsprayer
and expect to be treated as such.

As a patient, I expect to be treated as
a subject, not an object.
I am an end in myself,
not merely a means to serve the ends
of medical science and practice.

I will not allow my humanity to be reduced to a location.
Hence, I am neither a “bed number” nor a “room number.”
Nor will I permit being referred to in dehumanizing terms.
Thus, I am neither a “gallbladder” nor a “heart” nor a “kidney.”

My medical chart and history are about my life, about me;
but by them alone, you can never know me as a person.
I am not an illness,
which is what I have.
Nor am I a diagnosis,
which describes my medical condition.
Rather, I am a person.

Treat me, then, as a personmeditation doctor.jpg
and you will, at the same time,
treat my illness.

I am impressed by your medical knowledge and skills.
But I even more impressed by your affirming
my value as a person.

I am a patient
and a patient is,
above all,
a person.