Author: Pär Segerdahl (Page 2 of 40)

What is hidden behind the concept of research integrity?

14 May, 2024 / Pär Segerdahl / 1 Comment

In order to counteract scientific misconduct and harmful research, one often talks about protecting and supporting research integrity. The term seems to cover three different aspects of research, although the differences may not always be fully in mind. The term can refer to the character traits of individual researchers, for example, that the researcher values truth and precision and has good intentions. But the term can also refer to the research process, for example, that the method, data and results are correctly chosen, well executed and faithfully reproduced in scientific publications. Third, the term can refer to research-related institutions and systems, such as universities, ethical review, legislation and scientific journals. In the latter case, it is usually emphasized that research integrity presupposes institutional conditions beyond the moral character of individual researchers.

Does such a varied concept have to be problematic? Of course not, but possibly the concept of research integrity is less suitable, argue Gert Helgesson and William Bülow in an article that you can read here: Research Integrity and Hidden Value Conflicts.

In the article, they first discuss some ambiguities in the three uses of the concept of research integrity. Which personal traits are desirable in researchers and which values should they endorse? Does the integrity of the research process cover all ethically relevant aspects of research, including the application process, for example? Are research-related institutions actors with research integrity, or are they rather means that support research integrity?

Mentioning these ambiguities is not, as I understand it, intended as a decisive objection. Nor do the authors think that it is generally a shortcoming if concepts have a wide and varied use. But the concept of research integrity risks hiding value conflicts through its varying use, they argue. Suppose someone claims that, in order to protect and support research integrity, we should criminalize serious forms of scientific misconduct. This is perhaps true if by research integrity we refer to aspects of the research process, for example, that results are accurate and reliable. But the stricter regulation of research that this entails risks reducing the responsibility of individual researchers, which can undermine research integrity in the first sense. How should we compare the value of research integrity in the different senses? What does it mean to “increase research integrity”?

The concept of research integrity is not useless, the authors point out. But if we want to make value conflicts visible, if we want to clarify what we mean by research integrity and which forms of integrity are most important, as well as clear up the ambiguities mentioned above, then we will examine issues that are appropriately described as issues of research ethics.

If I understand the authors correctly, they mean that ethical questions about research should be characterized as research ethics. It is unfortunate that “research integrity” has come to function as an alternative designation for ethical questions about research. Everything becomes clearer if any questions about “research integrity,” if we want to use the concept, fall under research ethics.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Helgesson, G., Bülow, W. Research Integrity and Hidden Value Conflicts. Journal of Academic Ethics 21, 113–123 (2023). https://doi.org/10.1007/s10805-021-09442-0

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We like ethics

Finding the way when there is none

Greenhouse. Photo by Abigail Lynn on Unsplash

7 May, 2024 / Pär Segerdahl / 1 Comment

A difficulty for academic writers is managing the dual role of both knowing and not knowing, of both showing the way and not finding it. There is an expectation that such writers should already have the knowledge they are writing about, that they should know the way they show others right from the start. As readers, we are naturally delighted and grateful to share the authors’ knowledge and insight.

But academic writers usually write because something strikes them as puzzling. They write for the same reason that readers read: because they lack the knowledge and clarity required to find the way through the questions. This lack stimulates them to research and write. The way that did not exist, takes shape when they tackle their questions.

This dual role as a writer often worries students who are writing an essay or dissertation for the first time. They can easily perceive themselves as insufficiently knowledgeable to have the right to tackle the work. Since they lack the expertise that they believe is required of academic writers from the outset, does it not follow that they are not yet mature enough to begin the work? Students are easily paralyzed by the knowledge demands they place on themselves. Therefore, they hide their questions instead of tackling them.

It always comes as a surprise, that the way actually takes shape as soon as we ask for it. Who dares to believe that? Research is a dynamic interplay with our questions: with ignorance and lack of clarity. An academic writer is not primarily someone who knows a lot and who therefore can show others the way, but someone who dares and is even stimulated by this duality of both knowing and not knowing, of both finding and not finding the way.

If we have something important to learn from the exploratory writers, it is perhaps that living knowledge cannot be separated as pure knowledge and nothing but knowledge. Knowledge always interacts with its opposite. Therefore, essay writing students already have the most important asset to be able to write in an exploratory way, namely the questions they are wondering about. Do not hide the questions, but let them take center stage. Let the text revolve around what you do not know. Knowledge without contact with ignorance is dead. It solves no one’s problem, it answers no one’s question, it removes no one’s confusion. So let the questions sprout in the soil of the text, and the way will soon take shape.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

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Thinking about authorship

Objects that behave humanly

23 April, 2024 / Pär Segerdahl / 1 Comment

Many forms of artificial intelligence could be considered objects that behave humanly. However, it does not take much for us humans to personify non-living objects. We get angry at the car that does not start or the weather that does not let us have a picnic, as if they were against us. Children spontaneously personify simple toys and can describe the relationship between geometric shapes as, “the small circle is trying to escape from the big triangle.”

We are increasingly encountering artificial intelligence designed to give a human impression, for example in the form of chatbots for customer service when shopping online. Such AI can even be equipped with personal traits, a persona that becomes an important part of the customer experience. The chatbot can suggest even more products for you and effectively generate additional sales based on the data collected about you. No wonder the interest in developing human-like AI is huge. Part of it has to do with user-friendliness, of course, but at the same time, an AI that you find personally attractive will grab your attention. You might even like the chatbot or feel it would be impolite to turn it off. During the time that the chatbot has your attention, you are exposed to increasingly customized advertising and receive more and more package offers.

You can read about this and much more in an article about human relationships with AI designed to give a human impression: Human/AI relationships: challenges, downsides, and impacts on human/human relationships. The authors discuss a large number of examples of such AI, ranging from the chatbots above to care robots and AI that offers psychotherapy, or AI that people chat with to combat loneliness. The opportunities are great, but so are the challenges and possible drawbacks, which the article highlights.

Perhaps particularly interesting is the insight into how effectively AI can create confusion by exposing us to objects equipped with human response patterns. Our natural tendency to anthropomorphize non-human things meets high-tech efforts to produce objects that are engineered to behave humanly. Here it is no longer about imaginatively projecting social relations onto non-human objects, as in the geometric example above. In interaction with AI objects, we react to subtle social cues that the objects are equipped with. We may even feel a moral responsibility for such AI and grieve when companies terminate or modify it.

The authors urge caution so that we do not overinterpret AI objects as persons. At the same time, they warn of the risk that, by avoiding empathic responses, we become less sensitive to real people in need. Truly confusing!

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Zimmerman, A., Janhonen, J. & Beer, E. Human/AI relationships: challenges, downsides, and impacts on human/human relationships. AI Ethics (2023). https://doi.org/10.1007/s43681-023-00348-8

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A way out of the Babylonian confusion of tongues in the theorizing of consciousness?

Dictionary "Collaborate", Image by Dianne Hope from Pixabay

16 April, 2024 / Pär Segerdahl / 1 Comment

There is today a wide range of competing theories, each in its own way trying to account for consciousness in neurobiological terms. Parallel to the “Babylonian confusion of tongues” and inability to collaborate that this entails in the theorizing of consciousness, progress has been made in the empirical study of the brain. Advanced methods for imaging and measuring the brain and its activities map structures and functions that are possibly relevant for consciousness. The problem is that these empirical data once again inspire a wide range of theories about the place of consciousness in the brain.

It has been pointed out that a fragmented intellectual state such as this, where competing schools of thought advocate their own theories based on their own starting points – with no common framework or paradigm within which the proposals can be compared and assessed – is typical of a pre-scientific stage of a possibly nascent science. Given that the divergent theories each claim scientific status, this is of course troubling. But maybe the theories are not as divergent as they seem?

It has been suggested that several of the theories, upon closer analysis, possibly share certain fundamental ideas about consciousness, which could form the basis of a future unified theory. Today I want to recommend an article that self-critically examines this hope for a way out of the Babylonian confusion. If the pursuit of a unified theory of consciousness is not to degenerate into a kind of “manufactured uniformity,” we must first establish that the theories being integrated are indeed comparable in relevant respects. But can we identify such common denominators among the competing theories, which could support the development of an overarching framework for scientific research? That is the question that Kathinka Evers, Michele Farisco and Cyriel Pennartz investigate for some of the most debated neuroscientifically oriented theories of consciousness.

What do the authors conclude? Something surprising! They come to the conclusion that it is actually quite possible to identify a number of common denominators, which show patterns of similarities and differences among the theories, but that this is still not the way to an overall theory of consciousness that supports hypotheses that can be tested experimentally. Why? Partly because the common denominators, such as “information,” are sometimes too general to function as core concepts in research specifically about consciousness. Partly because theories that have common denominators can, after all, be conceptually very different.

The authors therefore suggest, as I understand them, that a more practicable approach could be to develop a common methodological approach to testing hypotheses about relationships between consciousness and the brain. It is perhaps only in the empirical workshop, open to the unexpected, so to speak, that a scientific framework, or paradigm, can possibly begin to take shape. Not by deliberately formulating unified theory based on the identification of common denominators among competing theories, which risks manufacturing a facade of uniformity.

The article is written in a philosophically open-minded spirit, without ties to specific theories. It can thereby stimulate the creative collaboration that has so far been inhibited by self-absorbed competition between schools of thought. Read the article here: Assessing the commensurability of theories of consciousness: On the usefulness of common denominators in differentiating, integrating and testing hypotheses.

I would like to conclude by mentioning an easily neglected aspect of how scientific paradigms work (according to Thomas Kuhn). A paradigm does not only generate possible explanations of phenomena. It also generates the problems that researchers try to solve within the paradigm. Quantum mechanics and evolutionary biology enabled new questions that made nature problematic in new explorable ways. A possible future paradigm for scientific consciousness research would, if this is correct, not answer the questions about consciousness that baffle us today (at least not without first reinterpreting them). Rather, it would create new, as yet unasked questions, which are explorable within the paradigm that generates them.

The authors of the article may therefore be right that the most fruitful thing at the moment is to ask probing questions that help us delineate what actually lends itself to investigation, rather than to start by manufacturing overall theoretical uniformity. The latter approach would possibly put the cart before the horse.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

K. Evers, M. Farisco, C.M.A. Pennartz, “Assessing the commensurability of theories of consciousness: On the usefulness of common denominators in differentiating, integrating and testing hypotheses,” Consciousness and Cognition, Volume 119, 2024,

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Minding our language

The doubtful beginnings of philosophy

26 March, 2024 / Pär Segerdahl / 3 Comments

Philosophy begins with doubt, this has been emphasized by many philosophers. But what does it mean to doubt? To harbor suspicions? To criticize accepted beliefs? In that case, doubt is based on thinking we know better. We believe that we have good reason to doubt.

Is that doubting? Thinking that you know? It sounds paradoxical, but it is probably the most common form of doubt. We doubt, and think we can easily explain why. But this is hardly the doubt of philosophy. For in that case philosophy would not begin with doubt, but with belief or knowledge. If a philosopher doubts, and easily motivates the doubt, the philosopher will soon doubt her own motive for doubting. To doubt, as a philosopher doubts, is to doubt one’s own thought. It is to admit: I don’t know.

Perhaps I have already quoted Socrates’ famous self-description too many times, but there is a treasure buried in these simple words:

“when I don’t know things, I don’t think that I do either.”

The oracle at Delphi had said of Socrates that he was the wisest of all. Since Socrates did not consider himself more knowledgeable than others, he found the statement puzzling. What could the oracle mean? The self-description above was Socrates’ solution to the riddle. If I am wiser than others, he thought, then my wisdom cannot consist in knowing more than others, because I do not. But I have a peculiar trait, and that is that when I do not know, I do not think I know either. Everyone I question here in Athens, on the other hand, seems to have the default attitude that they know, even when I can demonstrate that they do not. Whatever I ask them, they think they know the answer! I am not like that. If I do not know, I do not react as if I knew either. Perhaps this was what the oracle meant by my superior wisdom?

So, what did Socrates’ wisdom consist in? In beginning with doubt. But must he not have had reason to doubt? Surely, he must have known something, some intuition at least, which gave him reason to doubt! Curiously, Socrates seems to have doubted without good reason. He said that he heard an inner voice urging him to stop and be silent, just as he was about to speak verbosely as if he knew something: Socrates’ demon. But how could an “inner voice” make Socrates wise? Is that not rather a sure sign of madness?

I do not think we should make too much of the fact that Socrates chose to describe the situation in terms of an inner voice. The important thing is that he does not react, when he does not know. Imagine someone who has become clearly aware of her own reflex to get angry. The moment she notices that she is about to get angry, she becomes completely calm instead. The drama is over before it begins. Likewise, Socrates became completely calm the moment he noted his own reflex to start talking as if he knew something. He was clearly aware of his own knowledge reflex.

What is the knowledge reflex? We have already felt its activity in the post. It struck us when we thought we knew that a wise person cannot doubt without reason. It almost drove us mad! If Socrates doubted, he must have had good reason! If an “inner voice” inspired doubt, it would not be wisdom, but a sure sign of madness! This is the knowledge reflex. To suddenly not be able to stop talking, as if we had particularly good reason to assert ourselves. Socrates never reacted that way. In those situations, he noted the knowledge reflex and immediately became perfectly calm.

The value of becoming completely calm just when the knowledge reflex wants to set us in motion is that it makes us free to examine ourselves. If we let the knowledge reflex drive our doubts – “this is highly dubious, because…” – we would not question ourselves, but assert ourselves. We would doubt the way we humans generally doubt, because we think we have reason to doubt. Of course, Socrates does not doubt arbitrarily, like a madman, but the source of his doubt becomes apparent only in retrospect. Philosophy is love for the clarity we lack when philosophizing begins. Without this loving attitude towards what we do not know, our collective human knowledge risks becoming a colossus on clay feet – is it already wobbly?

When the knowledge reflex no longer controls us, but is numbed by philosophical self-doubt, we are free to think independently and clearly. Therefore, philosophy begins with doubt and not with belief or knowledge.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Plato. “The Apology of Socrates.” In The Last Days of Socrates, translated by Christopher Rowe, 32-62. Penguin Books, 2010.

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Thinking about thinking

Women on AI-assisted mammography

Radiologist looking at X-rays, Photo by National Cancer Institute on Unsplash

12 March, 2024 / Pär Segerdahl / 1 Comment

The use of AI tools in healthcare has become a recurring theme on this blog. So far, the posts have mainly been about mobile and online apps for use by patients and the general public. Today, the theme is more advanced AI tools which are used professionally by healthcare staff.

Within the Swedish program for breast cancer screening, radiologists interpret large amounts of X-ray images to detect breast cancer at an early stage. The workload is great and most of the time the images show no signs of cancer or pre-cancers. Today, AI tools are being tested that could improve mammography in several ways. AI could be used as an assisting resource for the radiologists to detect additional tumors. It could also be used as an independent reader of images to relieve radiologists, as well as to support assessments of which patients should receive care more immediately.

For AI-assisted mammography to work, not only the technology needs to be developed. Researchers also need to investigate how women think about AI-assisted mammography. How do they perceive AI-assisted breast cancer screening? Four researchers, including Jennifer Viberg Johansson and Åsa Grauman at CRB, interviewed sixteen women who underwent mammography at a Swedish hospital where an AI tool was tested as a third reviewer of the X-ray images, along with the two radiologists.

Several of the interviewees emphasized that AI is only a tool: AI cannot replace the doctor because humans have abilities beyond image recognition, such as intuition, empathy and holistic thinking. Another finding was that some of the interviewees had a greater tolerance for human error than if the AI tool failed, which was considered unacceptable. Some argued that if the AI tool makes a mistake, the mistake will be repeated systematically, while human errors are occasional. Some believed that the responsibility when the technology fails lies with the humans and not with the technology.

Personally, I cannot help but speculate that the sharp distinction between human error, which is easier to reconcile with, and unacceptably failing technology, is connected to the fact that we can say of humans who fail: “After all, the radiologists surely did their best.” On the other hand, we hardly say about failing AI: “After all, the technology surely did its best.” Technology does not become subject to certain forms of conciliatory considerations.

The authors themselves emphasize that the participants in the study saw AI as a valuable tool in mammography, but held that the tool cannot replace humans in the process. The authors also emphasize that the interviewees preferred that the AI tool identify possible tumors with high sensitivity, even if this leads to many false positive results and thus to unnecessary worry and fear. In order for patients to understand AI-assisted healthcare, effective communication efforts are required, the authors conclude.

It is difficult to summarize the rich material from interview studies. For more results, read the study here: Women’s perceptions and attitudes towards the use of AI in mammography in Sweden: a qualitative interview study.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Viberg Johansson J, Dembrower K, Strand F, et al. Women’s perceptions and attitudes towards the use of AI in mammography in Sweden: a qualitative interview study. BMJ Open 2024;14:e084014. doi: 10.1136/bmjopen-2024-084014

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Approaching future issues

Mobile apps to check symptoms and get recommendations: what do users say?

5 March, 2024 / Pär Segerdahl / 1 Comment

What will you do if you feel sick or discover a rash and wonder what it is? Is it something serious? If you do not immediately contact healthcare, a common first step is to search for information on the internet. But there are also applications for mobiles and online, where users can check their symptoms. A chatbot asks for information about the symptoms. The user then receives a list of possible causes as well as a recommendation, for example to see a doctor.

Because the interaction with the chatbot can bring to mind a visit to the doctor who makes a diagnosis and recommends action, these apps raise questions that may have more to do with these tempting associations than with reality. Will the apps in the future make visiting the doctor redundant and lead to the devaluing of medical professions? Or will they, on the contrary, cause more visits to healthcare because the apps often make such recommendations? Do they contribute to better diagnostic processes with fewer misdiagnoses, or do they, on the contrary, interfere with the procedure of making a diagnosis?

The questions are important, provided they are grounded in reality. Are they? What do users really expect from these symptom checker apps? What are their experiences as users of such digital aids? There are hardly any studies on this yet. German researchers therefore conducted an interview study with participants who themselves used apps to check their symptoms. What did they say when they were interviewed?

The participants’ experiences were not unequivocal but highly variable and sometimes contradictory. But there was agreement on one important point. Participants trusted their own and the doctor’s judgments more than they trusted the app. Although opinions differed on whether the app could be said to provide “diagnoses,” and regardless of whether or not the recommendations were followed, the information provided by the app was considered to be indicative only, not authoritative. The fear that these apps would replace healthcare professionals and contribute to a devaluation of medical professions is therefore not supported in the study. The interviewees did not consider the apps as a substitute for consulting healthcare. Many saw them rather as decision support before possible medical consultation.

Some participants used the apps to prepare for medical appointments. Others used them afterwards to reflect on the outcome of the visit. However, most wanted more collaboration with healthcare professionals about using the apps, and some used the apps because healthcare professionals recommended them. This has an interesting connection to a Swedish study that I recently blogged about, where the participants were patients with rheumatoid arthritis. Some participants in that study had prepared their visits to the doctor very carefully by using a similar app, where they kept logbook of their symptoms. They felt all the more disappointed when they experienced that the doctor showed no interest in their observations. Maybe better planning and collaboration between patient and healthcare is needed regarding the use of similar apps?

Interview studies can provide valuable support for ethical reasoning. By giving us insights into a reality that we otherwise risk simplifying in our thinking, they help us ask better questions and discuss them in a more nuanced way. That the results are varied and sometimes even contradictory is therefore not a weakness. On the contrary, we get a more faithful picture of a whole spectrum of experiences, which do not always correspond to our usually more one-sided expectations. The participants in the German study did not discuss algorithmic bias, which is otherwise a common theme in the ethical debate about AI. However, some were concerned that they themselves might accidentally lead the app astray by giving biased input that expressed their own assumptions about the symptoms. Read the study here: “That’s just Future Medicine” – a qualitative study on users’ experiences of symptom checker apps.

Another unexpected result of the interview study was that several participants discussed using these symptom checker apps not only for themselves, but also for friends, partners, children and parents. They raised their concerns about this, as they perceived health information from family and friends as private. They were also concerned about the responsibility they assumed by communicating the analyzes and recommendations produced by the app to others. The authors argue that this unexpected finding raises new questions about responsibility and that the debate about digital aids related to health and care should be more attentive to relational ethical issues.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Müller, R., Klemmt, M., Koch, R. et al. “That’s just Future Medicine” – a qualitative study on users’ experiences of symptom checker apps. BMC Med Ethics 25, 17 (2024). https://doi.org/10.1186/s12910-024-01011-5

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Can positive action improve a meritocracy?

Woman teaching, photo by ThisIsEngineering on Pexels

20 February, 2024 / Pär Segerdahl / 1 Comment

Despite political efforts to change the situation, gender imbalance is still evident in European universities and research institutions. A powerful tool for change is positive action. The tool may seem to be at odds with the meritocratic values that distinguish academia. Resistance to such measures may seem particularly well-motivated in science, which is supposed to be value-neutral and only let academic merit be the decisive factor behind researchers’ success in the competition for employment and research grants.

However, merits can be assessed and measured in different ways and merit systems may, for historical reasons, favor men over women. There are still societal expectations that the woman should take the main responsibility for children and aging parents, as well as for other household tasks. This pattern is reflected in working life, where female researchers can be expected to also take care of the academic housework. Dual household work reasonably gives women worse conditions in a competitive work environment that rewards productivity and quantity. Can the merit system then be said to be value neutral? Or does it prevent important changes not only to the gender distribution, but also to the system itself, which possibly favors quantity over quality, certain types of research questions over others, and self-absorbed competition over good collaboration?

Meritocracies, like everything else in this world, are changeable. They can change without ceasing to be meritocracies. Positive action could give the academic merit system a push in a possibly better direction, with better ways of assessing scholarly merit, soon helping to render the tool redundant. We therefore need to approach the question of positive action with our eyes open to both opportunities and risks.

The European project MINDtheGEPs (gender equality in research) recently published a policy brief, intended to support thoughtful implementation of positive action in European research. The tool can be used in three important areas: when awarding research grants and fellowships, when hiring full professors, and in the composition of evaluation committees. The policy brief provides an overview of common arguments for and against in the debate about positive action in European research organizations, divided into these three important areas. It is instructive to see the arguments side by side, as well as the counterarguments against the counterarguments. Because is it really self-evident that positive action must undermine a meritocracy?

Read MINDtheGEPs’ policy brief here: Gender quotas & positive action: An attack on meritocracy? There you will also find case studies of positive action at two Italian universities.

MINDtheGEPs hosts a series of Open Forums to discuss gender equality in the academic and research & innovation sectors, to facilitate knowledge exchange and mutual learning among scholars, practitioners and professionals supporting gender equality policies and measures. On 20 March 2024, their next Open Forum, they will share and discuss the contents of their latest policy brief – exploring the contentious topic of positive action, assessing arguments for and against, and drawing insights from MINDtheGEPs’ Gender Equality Plan development.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Solera C, Cipriani N, Holm Bodin A. (2023) Gender quotas & positive action: An attack on meritocracy? Zenodo. DOI: 10.5281/zenodo.1002437

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We challenge habits of thought

Time to forget time

13 February, 2024 / Pär Segerdahl / 1 Comment

A theme in recent blog posts has been our need for time. Patients need time to be listened to; time to ask questions; time to decide whether they want to be included in clinical studies, and time for much more. Healthcare workers need time to understand the patients’ situation; time to find solutions to the individual problems of patients suffering from rheumatoid arthritis, and time for much more. This theme, our need for time, got me thinking about what is so great about time.

It could be tempting to conduct time and motion studies of our need for time. How much time does the patient need to spend with the doctor to feel listened to? How much time does the nurse need to spend with the patient to get the experience of providing good care? The problem with such studies is that they destroy the greatness of time. To give the patient or the nurse the measured time, prescribed by the time study, is to glance at the clock. Would you feel listened to if the person you were talking to had a stopwatch hanging around their neck? Would you be a good listener yourself if you waited for the alarm signal from the stopwatch hanging around your neck?

Time studies do not answer our question of what we need, when we need time. If it was really a certain amount of time we needed, say fifteen minutes, then it should make no difference if a ticking stopwatch hung around the neck. But it makes a difference! The stopwatch steals our time. So, what is so great about time?

I think the answer is well on its way to revealing itself, precisely because we give it time to come at its own pace. What we need when we need time, is to forget time! That is the great thing about having time. That we no longer think about it.

Again, it can be tempting to conduct time studies. How much time does the patient and the doctor need to forget time? Again, time studies ruin the greatness of time. How? They frame everything in time. They force us to think about time, even when the point is to forget it.

Our need for time is not about measured quantities of time, but about the timeless quality of not thinking about time. Thinking about time steals time from us. Since it is not really about time, it does not have to take that long.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

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We challenge habits of thought

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

Woman writing, photo by Pavel Danilyuk on Pexels

6 February, 2024 / Pär Segerdahl / 2 Comments

Not all diseases can be cured, but medication along with other measures can alleviate the symptoms. Rheumatoid arthritis is one such disease. Medicines for symptoms such as swellings and stiffness have become very effective. As a patient, you can find good ways to live with the disease, even if it can mean more or less regular contacts with healthcare (depending on how you are affected). Not only with the doctor who prescribes medication, but often with an entire healthcare team: doctor, nurse, physiotherapist, occupational therapist and counselor. There are aids that make everyday life easier, such as orthopedic shoes, splints and easier-to-grip faucets at home, and many hospitals also offer patients education about the disease and how you can live and function with it, at home as well as at work.

The symptoms vary, not only between individuals but also for the same individual over time. The need for care and support is thus individual and changing. Therefore, it is important that the interaction between patient and healthcare works efficiently and with sensitivity to the patient’s unique situation at the moment. Since patients to a great extent have to deal with their illness on their own, and over time become increasingly knowledgeable about their own disease, it is important to listen to the patient. Not only to improve the patient’s experience of healthcare, but also to ensure that individual patients receive the care and support they need at the right moment. The patient may not be part of the healthcare team, but is still one of the most important team players.

There are digital self-care applications for rheumatoid arthritis, where the patients who choose to use the tools can get advice and information about the disease, prepare for contacts with healthcare, and keep a digital logbook about their symptoms, experiences and lifestyle. Such digital self-care apps can be assumed to make patients even more knowledgeable about their own disease. The logbook contains relevant observations, which the patient can describe in the meetings with the healthcare provider. What an asset to the care team!

Given the importance of good continuous team play between patient and healthcare in diseases such as rheumatoid arthritis, it is important that researchers regularly examine how patients experience the interaction. Jennifer Viberg Johansson, Hanna Blyckert and Karin Schölin Bywall recently conducted an interview study with patients at various hospitals in Sweden. The aim was to investigate not only the patients’ experiences of the interaction with healthcare, but also their experiences of a digital self-care app, and how the app affected the communication between patient and doctor.

The patients’ perception of their interaction with healthcare varied greatly. About half felt prioritized and excellently supported by the healthcare team and half felt neglected, some even dehumanized. This may reflect how different hospitals have different resources and competencies for rheumatoid arthritis, but also unclear communication about what the patients can expect. Many patients found the self-care app both useful and fun to use, and a good support when preparing for healthcare visits. At the same time, these detailed preparations could lead to even greater disappointment when it was felt that the doctor was not listening and barely looking at the patient.

Collaborative teamwork and clear communication is identified in the study as important contributing factors to patients’ well-being and ability to manage their illness. The patients valued time for dialogue with the rheumatologist and appreciated when their personal observations of life with the disease were listened to. Because some of the interviewed patients had the negative experience that the doctor did not listen to the observations they had compiled in the app, the authors believe that the use of digital tools should be promoted by the healthcare system and there should be an agreement on how the tool should be used at meetings to plan care and support.

For more details about the patients’ experiences, read the article here: Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study.

The study emphasizes the importance of patient-centered care for individuals with rheumatoid arthritis, as well as the importance of considering patients’ psychological well-being alongside their physical health. An important point in the study could perhaps be summarized as follows: appreciate the patient as a skilled team player.

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Viberg Johansson J, Blyckert H, Schölin Bywall K. Experiences of individuals with rheumatoid arthritis interacting with health care and the use of a digital self-care application: a qualitative interview study. BMJ Open 2023;13:e072274. doi: 10.1136/bmjopen-2023-072274

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In dialogue with patients

Author: Pär Segerdahl (Page 2 of 40)

What is hidden behind the concept of research integrity?

Finding the way when there is none

Objects that behave humanly

A way out of the Babylonian confusion of tongues in the theorizing of consciousness?

The doubtful beginnings of philosophy

Women on AI-assisted mammography

Mobile apps to check symptoms and get recommendations: what do users say?

Can positive action improve a meritocracy?

Time to forget time

Living with rheumatoid arthritis: how do patients perceive their interaction with healthcare and a self-care app?

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