Patient experience and Co-Creation in Health

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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


Dr Alicia Connell,

Suzanne Gordon,

Dr Jerome Groopman,

Dr Jerome Groopman,

Dr Gavin Francis,

Iona Heath,

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

Åsa Moberg,

Myndigheten för Vårdanalys,–jamforelser-mellan-Sverige-och-tio-andra-lander

Jaishikha Nautiyal,

Dar Danielle Ofri,

Sara Riggare,

Sharon Roman,

Tiffany Simms,

Svenska Dagbladet,åa-patienterna









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

[8] &