First compute no harm

Is it acceptable for algorithms today, or an AGI in a decade’s time, to suggest withdrawal of aggressive care and so hasten death? Or alternatively, should it recommend persistence with futile care? The notion of “doing no harm” is stretched further when an AI must choose between patient and societal benefit. We thus need to develop broad principles to govern the design, creation, and use of AI in healthcare. These principles should encompass the three domains of technology, its users, and the way in which both interact in the (socio-technical) health system.

Source: Enrico Coiera et al. (2017). First compute no harm. BMJ Opinion.

The article goes on to list some of the guiding principles for the development of AI in healthcare, including the following:

  • AI must be designed and built to meet safety standards that ensure it is fit for purpose and operates as intended.
  • AI must be designed for the needs of those who will work with it, and fit their workflows.
  • Humans must have the right to challenge an AI’s decision if they believe it to be in error.
  • Humans should not direct AIs to perform beyond the bounds of their design or delegated authority.
  • Humans should recognize that their own performance is altered when working with AI.
  • If humans are responsible for an outcome, they should be obliged to remain vigilant, even after they have delegated tasks to an AI.

The principles listed above are only a very short summary. If you’re interested in the topic of ethical decision making in clinical practice, you should read the whole thing.

The AI Threat to Democracy

With the advent of strong reinforcement learning…, goal-oriented strategic AI is now very much a reality. The difference is one of categories, not increments. While a supervised learning system relies upon the metrics fed to it by humans to come up with meaningful predictions and lacks all capacity for goal-oriented strategic thinking, reinforcement learning systems possess an open-ended utility function and can strategize continuously on how to fulfil it.

Source: Krumins, A. (2018). The AI Threat to Democracy.

“…an open-ended utility function” means that the algorithm is given a goal state and then left to it’s own devices to figure out how best to optimise towards that goal. It does this by trying a solution and seeing if it got closer to the goal. Every step that moves the algorithm closer to the goal state is rewarded (typically by a token that the algorithm is conditioned to value). In other words, an RL algorithm takes actions to maximise reward. Consequently, it represents a fundamentally different approach to problem-solving than supervised learning, which requires human intervention to tell the algorithm whether or not it’s conclusions are valid.

In the video below, a Deepmind researcher uses AlphaGo and AlphaGo Zero to illustrate the difference between supervised and reinforcement learning.

This is both exciting and a bit unsettling. Exciting because it means that an AI-based system could iteratively solve for problems that we don’t yet know how to solve ourselves. This has implications for the really big, complex challenges we face, like climate change. On the other hand, we should probably start thinking very carefully about the goal states that we ask RL algorithms to optimise towards, especially since we’re not specifying up front what path the system should take to reach the goal, and we have no idea if the algorithm will take human values into consideration when making choices about achieving its goal. We may be at a point where the paperclip maximiser is no longer just a weird thought experiment.

Suppose we have an AI whose only goal is to make as many paper clips as possible. The AI will realize quickly that it would be much better if there were no humans because humans might decide to switch it off. Because if humans do so, there would be fewer paper clips. Also, human bodies contain a lot of atoms that could be made into paper clips. The future that the AI would be trying to gear towards would be one in which there were a lot of paper clips but no humans.

Bostrum, N. (2003). Ethical Issues in Advanced Artificial Intelligence.

We may end up choosing goal states without specifying in advance what paths the algorithm should not take because they would be unaligned with human values. Like the problem that Mickey faces in the Sorcerer’s Apprentice, the unintended consequences of our choices with reinforcement learning may be truly significant.

How to ensure safety for medical artificial intelligence

When we think of AI, we are naturally drawn to its power to transform diagnosis and treatment planning and weigh up its potential by comparing AI capabilities to those of humans. We have yet, however, to look at AI seriously through the lens of patient safety. What new risks do these technologies bring to patients, alongside their obvious potential for benefit? Further, how do we mitigate these risks once we identify them, so we can all have confidence the AI is helping and not hindering patient care?

Source: Coiera, E. (2018). How to ensure safety for medical artificial intelligence.

Enrico Coiera covers a lot of ground (albeit briefly) in this short post:

  • The prevalence of medical error as a cause of patient harm
  • The challenges and ethical concerns that are inherent in AI-based decision-making around end-of-life care
  • The importance of high-quality training data for machine learning algorithms
  • Related to this, the challenge of poor (human) practice being encoded into algorithms and so perpetuated
  • The risk of becoming overly reliant on AI-based decisions
  • Limited transferability when technological solutions are implemented in different contexts
  • The importance of starting with patient safety in algorithm decision, rather than adding it later

If you use each of the points in the summary above, there’s enough of a foundation in this article to really get to grips with some of the most interesting and challenging areas of machine learning in clinical practice. It might even be a useful guide to building an outline for a pretty comprehensive research project.

For more thoughts on developing a research agenda in related topics, see: AMA passes first policy guidelines on augmented intelligence.

Note: you should check out Enrico’s Twitter feed, which is a goldmine for cool (but appropriately restrained) ideas around machine learning in clinical practice.

AI at Google: Our principles

  1. Be socially beneficial
  2. Avoid creating or reinforcing unfair bias
  3. Be built and tested for safety
  4. Be accountable to people
  5. Incorporate privacy design principles
  6. Uphold high standards of scientific excellence
  7. Be made available for uses that accord with these principles

Source: AI at Google: Our principles

This list isn’t a bad start if you’re looking for guidance when it comes to AI systems development, and it’s a pretty good substitute for what is currently lacking in the development of healthcare AI. For example, you could easily map these principles onto the Principle ethics (beneficence, non-maleficence, justice, autonomy), which many consider to be the cornerstone of professional ethical practice.

Note: You could argue that this is a self-serving list, published to support Google’s position as a company committed to doing the Right Thing (since “Don’t be evil” was removed from their code of conduct). However, Google’s recent decision not to renew a lucrative contract with the Pentagon says a lot about their willingness to at least try and uphold their position. Regardless, even taking the list at face value is a useful approach to thinking about how to develop AI-based systems.

IPE course project update

This post is cross-posted from the International Ethics Project site.

My 4th year students have recently completed the first writing task in the IEP course pilot project. I thought I’d post a quick update on the process using screenshots to illustrate how the course is being run. We’re using a free version of WordPress which has certain limitations. For example it’s hard to manage different cohorts of students, but there are many more advantages, which I’ll write about in another post.

My students will keep writing for their portfolios using the course website, which I’ll keep updating and refining based on our experiences. The idea is that by the end of the year we’ll have figured out how to use the site most effectively for students to work through the course for the project.

Introducing the Humanities into physiotherapy education

This post has been modified and published on The Conversation: Africa as Physiotherapy students have much to learn from the humanities.

Selection_018I’m increasingly drawn to the idea of integrating some aspect of the Humanities into undergraduate physiotherapy education. We focus (almost) all of the curriculum on the basic sciences and then the clinical sciences, which has a certain pragmatic appeal but ignores the fact that a person is more than an assemblage of body parts. We spend a lot of time time teaching anatomy and biomechanics (i.e. bodies as machines), and then exploring what we can do to bodies in order to “fix” them. While we pay lip service to the holistic management of the patient, there is little in our curriculum that signals to the student that this is something that we really care about.

“Science is the foundation of an excellent medical education, but a well-rounded humanist is best suited to make the most of that education.”

Empathy is critical to the development of professionalism in medical students, and the humanities – particularly literature – have been touted as an effective tool for increasing student empathy. In addition, there is some evidence that training in the Humanities and liberal arts results in health professionals with improved professionalism and self-care. In other words, health professionals who are exposed to the arts as part of their undergraduate education may demonstrate an increased ability to manage themselves and their patients with more care.

Hilary Allen_Artist in Residence 2015_1000

The relationship between emotion and learning has also been explored, with findings from multiple disciplines supporting the idea that emotion is intimately and inseparably intertwined with cognition in guiding learning, behaviour and decision making. The introduction of the Humanities in health professions education therefore has another potential impact; by using the arts to develop an awareness of emotional response, educators and students may find that exposure to the Humanities might lead to improvements in learning.

As I started looking into these ideas in a bit more detail, I realised that there are several examples of how art and literature are being explored formally by some very prominent medical schools.

dancingwheelsI was disappointed – although not surprised – not to find any good examples of physiotherapy departments who have formally integrated the Humanities into their curricula. However, I did find several papers (all by the same author with various colleagues) that describe a process of integrating these concepts into an undergraduate physiotherapy programme over a period of time, and these are listed in the references below.

avery_hosp_ward_low_resOver the past year or so, I’ve tried to bring some of these ideas into my Professional Ethics module, using the assignments for students to explore the Humanities (art, literature, theatre, music, dance, etc.) as a process of developing a sense of awareness of empathy in the context of clinical education. They can interpret the assignment in any way they want, for example, by writing a poem, drawing a picture, taking a photo, or re-interpreting a song. However, the important part is the reflection that they attach to the piece. Here are some examples of previous student work in this module, without the more personal reflections that accompany them.

  • Eleven hundred hours – poem by a student
  • The mind of the innocent – poem by a student
  • I’ve had two students provide videos of interpretive dance sessions used as methods to try and present an embodied experience of what it might be like to live with a disability.
  • Photovoice assignments (see below for examples): in these assignments students took photos of people and places and then reflected on how those experiences had informed their personal and professional development as ethical practitioners.

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I’m hoping to get some experience with this process as part of these little experiments I’m running in the classroom, and that over time we can start building something more formal into the curriculum. Watch this space.

Additional readings

First draft of article on Informed Consent for the Clinical Teacher

Featured image “Diverging paths” by SDJ on Deviant Art.

I’ve just finished the first draft of my 13th article in the Clinical Teacher mobile app. It’s been a LONG time since I’ve managed to put some effort into this project, mainly for personal reasons (my second daughter was born in March last year and we moved house in September) but also because I found 2015 to be a very challenging year in terms of prioritising my writing projects (I have another post in progress where I talk about some new strategies for prioritisation in my workflow).

Anyway, here is the draft of my article on Informed Consent, which I’ll be publishing in the app within the next couple of weeks.

Introduction

A successful relationship between patient and health care practitioner is based on trust, which is developed partly by respecting the autonomy of the patient i.e. their right to make their own decisions about their bodies. Informed consent is the exercise of informed choice by a patient who has the capacity to give consent and is therefore a component of developing a trusting relationship between patient and therapist (Wilders, 2013). Patients need complete and honest information about various aspects of their health care, including diagnosis, prognosis, treatment options, likely treatment outcomes, common or serious side effects, and the timescale of the treatment in order for them to give their informed consent (Tippet, 2005).

Informed consent

The patient is the one who determines what is in their best interests, not the practitioner. Practitioners may recommend a course of action but should not pressurise patients to accept their advice. The practitioner must ensure that their opinion is a balanced point of view, providing the patient with enough detail from the various perspectives that they are able to give their own, voluntary consent. It is possible for patients to nominate a third party (provided they are still competent to make such a decision) to give consent on their behalf. This must be provided by the patient in writing.

Health care professionals must be confident that they have received consent from a patient – or other valid authority – before they perform an examination or investigation, provide treatment, or involve patients in teaching and research (General Medical Council, 2008). It should be based on the sharing of correct information, appropriate communication, and understanding and agreement on the part of the patient. In order for the process of informed consent to be correct and legal, the patient must have (Wilder, 2013):

  1. Knowledge of the nature or extent of the harm or risk
  2. Appreciated and understood the risk
  3. Consented to the risk
  4. The consent must have been comprehensive

All aspects of health care involves decision-making by patients and healthcare providers and the principles of informed consent apply to those decisions, from the treatment of minor conditions, to major interventions with significant risks or side effects. Whatever the context in which medical decisions are made, the health care professional must work in partnership with patients to ensure appropriate care. In order to achieve this, you should (General Medical Council, 2008):

  • Listen to patients and respect their views about their health
  • Discuss patients’ diagnosis, prognosis, treatment and care with them
  • Share the information that patients want or need in order to make decisions about their health
  • Maximise patients’ opportunities, and their ability, to make decisions for themselves
  • Respect the decisions that patients make

Written consent

Patients can express consent either orally or in written form. However, it is strongly recommended that consent be obtained in writing. This can be done either in the case notes, or on a specific consent form. The consent form should contain the information provided to the patient, specific requests by the patient and the scope of the consent given.

Once written consent has been given once, the practitioner can simply remind patients of the initial instance, if they present at a later date with a similar condition. However, this consent should be revisited regularly to ensure that the patient is still comfortable with the procedure. Verbal reminders and responses should still be noted in writing in the patient’s file. When a patient presents with a new condition, fresh consent must be obtained and appropriately documented.

Implied consent

Practitioners should use caution if relying on a patient’s compliance with a procedure as an indicator of consent because submission in itself may not indicate consent (Wilder, 2013). Just because a patient goes along with what is happening, does not mean that they understand the nature, extent and risks that are associated with it. Consent must be expressed explicitly at all times.

Sharing information

Informed consent is premised on the concept of sharing information with the patient. There is no single approach that will suit every patient, or apply in all circumstances. Some patients may want more or less information or involvement in the decision making process, depending on their needs. In addition, some patients may need additional support to understand information and express their views and preferences (General Medical Council, 2008).

The way you choose to discuss the various aspects of a patient’s condition, including diagnosis, prognosis and the treatment options that are available, can be just as important as the information itself (General Medical Council, 2013). When sharing information with a patient (or their family), you should:

  • Share information in a way that the patient can understand and when possible, in a place and at a time when they are best able to understand and retain it.

  • Be considerate when sharing information that the patient may find distressing.

  • Involve other members of the healthcare team in discussions with the patient, if this is appropriate.

  • Give the patient time to reflect, before and after they make a decision, especially if the information is complex or what you are proposing involves any risk.

  • Make sure the patient knows if there is a time limit on making their decision, and who they can contact if they have any questions or concerns.

  • Give information to patients in a balanced way. For example, if you recommend a course of action, you should explain your reasons for doing so but also be aware of putting unnecessary pressure on a patient to accept your advice.

  • Support your suggestions with written material or other visual aids (make sure the information is accurate and up to date).

  • Check to determine if the patient needs any additional support in order to understand the information you shared, to communicate their wishes, or to make a decision.

Bear in mind that some barriers to understanding and communication may not be obvious. For example, a patient may have certain anxieties that they have not mentioned before, or may be affected by pain or other underlying problems. Support for patients might include using an advocate or interpreter, asking those close to the patient about the patient’s communication needs, or giving the patient a written or audio record of the discussion and any decisions that were made.

The information provided to the patient should include the following:

  • The nature and extent of the procedure, using language that the patient understands
  • Whether students will be involved in the procedure, and the extent to which they will be involved
  • Reminders that the patient can withdraw consent at any time i.e. change their minds
  • Reminders that the patient can seek a second opinion
  • Details of the costs applicable (if relevant)

Possible reasons for not sharing information

Remember that patients are vulnerable and that overzealous truth-telling may be harmful to them. As a result they have an equal right to refuse to receive information about themselves and their condition (Tippet, 2005). From the General Medical Council (2008): “You should not withhold information necessary for decision making unless you judge that disclosure of some relevant information would cause the patient serious harm”.

If a patient has the capacity to make their own decisions but appears to not want to have relevant information shared with them, the health care practitioner should consider the following steps (General Medical Council, 2008):

  1. No-one else can make a decision on behalf of an adult who has the capacity to give their consent. If a patient asks you to make decisions on their behalf or wants to leave decisions to a relative, partner, friend, carer or another person close to them, you should explain that it is still important that they understand the options open to them, and what the treatment will involve. If they do not want this information, you should try to find out why.

  1. If, after discussion, a patient still does not want to know in detail about their condition or the treatment, you should respect their wishes, as far as possible. But you must still give them the basic information they need in order to give their consent to a proposed investigation or treatment.

  1. If a patient insists that they do not want even this information you must explain the potential consequences of them not having it, particularly if it means that their consent is not valid. You must record the fact that the patient has declined this information making it clear to them that they can change their mind at any time.

  1. You should not withhold the information that is necessary for making decisions for any other reason, including when a relative, partner, friend or carer asks you to, unless you believe that giving it would cause the patient serious harm. In this context serious harm means more than the patient simply becoming upset or deciding to refuse treatment.

  1. If you withhold information from the patient you must record your reason for doing so in the patient’s medical records and be prepared to explain and justify your decision. You should regularly review that decision and consider whether you could give information to the patient later, without causing them serious harm.

Obstacles to sharing information

Because of time or resource limitations, it might be difficult to give patients as much information or support in the decision making process as you, or they, would like. To help with this, consider the role that other members of the healthcare team might play and what other sources of information and support are available. For example, do you have access to patient information leaflets, advocacy services, expert patient programmes, or support groups for people with specific conditions?

Do your best to make sure that patients with additional needs, such as those with disabilities, have the time and support they need to make a decision. In all cases, treat patients fairly and make sure that you do not discriminate against them by providing them with less detailed information than you might do for others. If you believe that limits on your time or the information that is available for patients is compromising their ability to make an informed choice, you should raise your concerns with your line manager or other authority (General Medical Council, 2008).

Conditions for consent

In order for a patient to give valid informed consent, there are three components that must be present; disclosure, capacity and voluntariness (Faden & Beauchamp, 1986). Disclosure requires the therapist to provide the patient with the necessary information to make an independent decision. However, it is not enough that the therapist merely provides the information; they must also ensure that the patients have adequate comprehension of the information they provide. This latter aspect of the process implies that the consent form be written in language that is understandable by the general population, in addition to determining the level of the patient’s understanding during the initial assessment. Capacity refers to the ability of the patient to both understand the information provided and to subsequently form a reasonable judgement of the potential consequences of their decision. Finally, voluntariness refers to the patient’s right to freely exercise their decision-making without being subjected to external pressure such as coercion, manipulation, or undue influence (Beauchamp & Childress, 1994).

Capacity to give informed consent

In order to give consent patients must be able to understand the procedure that is being recommended, apply reasoning to consider the consequences of the procedure and its alternatives, appreciate the way in which this information applies to them, and be able to make a subsequent logical choice. Although psychiatric illness, in and of itself, does not change the presumption that an individual is competent, a patient’s ability to appreciate the consequences of a particular decision maybe shaped by specific mental symptoms. Thus, cognitive deficits (e.g., due to dementia or associated with depression) can impair the ability to recall and understand information about the procedure, suicidal ideas can affect perceptions of mortality risks, and the ambivalence and indecision that often occurs with depression can limit patients’ ability to make a choice about treatment. If a patient lacks decisional capacity, substituted consent (possibly by a family member) or a judicial hearing may be necessary (Lapid, Rummans, Pankratz & Appelbaum, 2004).

Therapists must always work from the premise that every adult patient has the capacity to make decisions about their health. This includes the ability to make decisions about whether to agree to, or refuse, an assessment, investigation or treatment. You should only regard a patient as lacking capacity once it is clear that, having been given all appropriate help and support, they cannot understand, retain, use or weigh up the information needed to make that decision, or communicate their wishes. It is essential that the therapist does not make the assumption that a patient lacks the capacity to make a decision because of their age, a disability, their appearance, behaviour, medical condition (including mental illness), their beliefs, their apparent inability to communicate, or the fact that they make a decision that you disagree with (General Medical Council, 2008).

If patients are not able to make decisions for themselves, the health care professional must work with those who are close to the patient and with other members of the team. They must take into account those views or preferences that were expressed by the patient and must also be aware of the legal context when a patient lacks the capacity to make their own choices (General Medical Council, 2008).

Children and informed consent

As children often lack the ability or legal power to provide true informed consent for medical decisions, it falls on parents (or legal guardians) to provide permission for medical assessments or procedures to be conducted on children. This “consent by proxy” usually works reasonably well but can lead to ethical dilemmas. This is particularly true when the judgement of the guardians differ with the therapist with regard to what constitutes an appropriate decision.

Children who are legally emancipated and unemancipated minors who are deemed to have medical decision making capacity, may be able to provide consent without the need for parental permission, although this depends on the laws of the country the child lives in (Committee on Bioethics, 1995).

Children are usually presumed to be incompetent to consent, but depending on their age and the influence of other factors, they can sometimes be asked to provide Informed assent.

Informed assent means a child’s agreement to medical procedures in circumstances where he or she is not legally authorised or lacks sufficient understanding for giving consent competently.

De Lourdes Levy, Larcher & Kurz (2003)

Medical professionals are advised to seek the assent of older children and adolescents by providing age appropriate information to these children to help empower them in the decision-making process (Committee on Bioethics, 1995). It should be noted that only legal guardians are able to provide informed consent for a child, and not adult siblings. In addition, parents may not order the termination of a treatment that is required to keep a child alive even if they feel it is in the best interests of the child.

Responsibility for seeking consent

It is the responsibility of the practitioner who will be providing the treatment, to obtain consent, since they will have a comprehensive understanding of the process, how it is to be carried out and the risks involved. In cases where the responsibility to obtain consent must be delegated to another party, they must ensure that the person they are delegating to:

  • Is suitably trained and qualified to take on the responsibility
  • Has sufficient knowledge of the investigation or treatment, and understands the risks involved
  • Understands, and agrees to act in accordance with established guidelines and legal frameworks that are related to issues of informed consent

If you delegate the responsibility of seeking consent to another party, you are still responsible for ensuring that the patient has been given enough time and information to make an informed decision, and has given their consent, before you start any investigation or treatment (General Medical Council, 2008).

Informed consent in research

Medical research is overseen by an institutional ethics committee that usually also oversees the informed consent process as part of any research project involving human beings or animals. Ethics clearance is applied for by researchers via a detailed proposal document, that lays out in detail – among other things – the ways in which the ethics inherent in the project are being considered.

Differences in local contexts (e.g. language and social norms) make the issue of informed consent in research a complex topic. There are five benchmarks for evaluating informed consent procedures in local contexts, with particular reference to developing countries (Emanuel, Wendler, Killen & Grady, 2004):

  1. The community should be involved in drawing up recruitment and incentive procedures that are consistent with local cultural, political and social practices. For example, in some cultures an incentive might be expected, while in others it could be considered offensive.

  2. Disclosure of information should be sensitive to the local context, using local languages, culturally appropriate idioms, and analogies that the local population will understand.

  3. Researchers may need to obtain consent from a range of different “spheres”, including community leaders, elders or other respected community members, and the heads of family. Note that this is not to imply that these individuals grant consent on behalf of other adults, only that they give permission for the researchers to enter the community.

  4. Researchers should use informed consent procedures that are contextually acceptable within a community but which also enable independent observers to verify that voluntary consent was obtained.

  5. Individuals must be made aware that their right to refuse to participate, or to withdraw from the study is actually enforced. Community or familial coercion or retribution needs to be guarded against, especially if compensation for participation is offered.

The World Health Organisation (WHO) has published a series of templates for Informed Consent in a variety of contexts, including research that involves children requiring parental consent, qualitative and clinical studies. These templates may be used to guide principal researchers as they develop an approach to informed consent in their research practices.

Seeking consent in the research process brings with it another set of challenges, especially in the social sciences where there is often little or no risk to participants. In addition, the fact that participants are aware that they are involved in a study may cause them to change their default behaviour (the Hawthorne Effect). In cases where the researcher is concerned that seeking consent will modify the outcomes of the study, the requirement for consent may be waived. However, this is only done after an Ethics Committee has weighed the possible risk to the study participants versus the benefit to society, as well as whether participants are present in the study of their own will and that they will be treated fairly.

Reviewing consent

Informed consent – especially in the clinical context – should be thought of as an ongoing dialogue between patient and healthcare practitioner (Emanuel, et al., 2004). The decision made by the patient should be reviewed at different points before treatment begins, to ensure that the patient’s point of view is consistent and can therefore be relied on. Before beginning treatment you or a member of the healthcare team should check that the patient still wants to go ahead and you should respond to any new or repeated concerns or questions they raise. This is particularly important if:

  1. A significant amount of time has passed since the initial decision was made.
  2. There have been material changes in the patient’s condition, or in any aspect of the proposed investigation or treatment.
  3. New information has become available, for example about the risks of treatment or other treatment options.

You need to make sure that patients are kept informed about the progress of their treatment and that they are able to make decisions at all stages, not just in the initial stage. If the treatment is ongoing you should make sure that there are clear arrangements in place to review decisions and if necessary, to make new ones (General Medical Council, 2008).

Conclusion

Informed consent is an essential aspect of clinical practice and medical research. The process of sharing relevant information with a patient to ensure that they can make an informed choice about their bodies and their health, is a central principle of ethics. Patient autonomy is premised on the idea that they – not the healthcare practitioner – are best positioned to make decisions about the relative risks and benefits of choosing a particular course of action.

Sharing information is an important aspect of consent, although what information to share, how much and when, are sometimes difficult to determine, especially in cases where patients are not competent. It is the responsibility of the healthcare practitioner to ensure that consent is obtained before proceeding down a particular path of management, and in cases where the actual process is delegated, it is the practitioners responsibility to ensure that the person the task is delegated to is trained to carry it out.

Seeking informed consent is complex, time consuming, possibly frustrating, and may even require health professionals to reconsider the role of power in their patient relationships. However, not only is it a legal requirement to involve the patient in decision-making around management, but it is a foundational ethical principle to adhere to in clinical practice.

References

Beauchamp, T.L. & Childress, J.F. (1994). Principles of Biomedical Ethics (4th edition). New York: Oxford University Press.

Committee on Bioethics (1995). Informed consent, parental permission, and assent in pediatric practice. Pediatrics, 95(2):314-7.

De Lourdes Levy, M., Larcher, V., & Kurz, R. (2003). Informed consent / assent in children. Statement of the Ethics Working Group of the Confederation of European Specialists in Paediatrics. European Journal of Pediatrics. 2003 Sep;162(9):629-33.

Emanuel, E. J., Wendler, D., Killen, J., & Grady, C. (2004). What makes clinical research in developing countries ethical? The benchmarks of ethical research. The Journal of infectious diseases, 189(5), 930–7.

Faden, R.R. & Beauchamp, T.L. (1986). A History and Theory of Informed Consent. New York: Oxford University Press.

General Medical Council (2008). Consent guidance: patients and doctors making decisions together.

Health Professions Council of South Africa (2008) Ethical rules, regulations and policy guidelines: Informed consent.

Lapid, M.I., Rummans, T.A., Pankratz, V.S. & Appelbaum, P.S. (2004). Decisional capacity of depressed elderly to consent to electroconvulsive therapy. Journal of Geriatric Psychiatry and Neurology, 17(1):42–46.

Spandorfer, J., Pohl, C. A., Rattner, S. L., & Nasca, T. J. (2010). Professionalism in medicine: A case-based guide for medical students. Cambridge University Press.

Tippett, V. (2005). “Trust me…I’m a medical student”: Truth and trust for student doctors. The Clinical Teacher, 2(1), 21–24.

Wilder, C. Seeking patients’ informed consent: The ethical considerations. Health Professions Council of South Africa news bulletin, March, 2013

World Health Organisation (n.d.). Informed Consent form templates.

The Oxford tutorial: Interesting ideas for learning

Earlier this year, I tried a new approach in my Professional Ethics class. I start the class by introducing a concept that is relevant to the students’ professional development in the context of our ethics module. I link the concept to something current and relevant that we could anchor the weeks topic to. For example, in one of our sessions we used the #RhodesMustFall campaign to anchor a discussion on history, race and power, and how these issues are still relevant in daily professional practice.

After we’ve spent about 15-20 minutes introducing and discussing the topic at the overview level, the students get into small groups of 3-5 and discuss how these concepts are relevant in their own practices and experiences as physiotherapy students in the health system. While they talk in their groups, I try to facilitate each discussion by adding additional comments and insights, often based on my own experiences and readings.

At the end of the session I give the students an assignment, due at our next session, usually a week later. While this assignment is most often a written piece of work, this year I also experimented with PhotoVoice (examples here and here) as an option for student submissions. There is almost always a peer feedback component included in the weekly assignment, whereby each student must give and receive feedback on their work, using the feedback to improve their submission. I then conduct a formative assessment of each student’s work, providing feedback for them to continue improving the work.

Immediately after the lesson I write up a summary of the session, adding a list of reading resources and often also providing guidance on things that I think would be useful for the students. This often includes additional reading on developing research questions, framing a question for online searches, filtering resources, writing, given and receiving feedback, etc. I think that these kinds of skills are essential for almost all the academic work that any literate person in the 21st century needs. I then share the summary with students via Google Drive, which creates a nice overview of the topics, discussion covered in class, and prompts for further exploration.

Each term we cover a major topic (e.g. professional development, ethical decision making, social justice, etc.), with the weekly topics providing background and context related to personal experiences within those topics. At the end of the year, the students combine all of their writing, reading, feedback, reflections, clinical experiences, etc. and submit a final portfolio of learning over the course of the year.

Which brings me to the title of this post. A few days ago I came across Oxford tutorials while reading An appetite for wonder, the first in a two part biography of Richard Dawkins. I had thought that my lessons described above with my ethics students were quite innovative until I read up a little bit more on the Oxford tutorial system. The basic premise is that undergraduate students are assigned tutors from their college (which is different to their disciplinary department), who guide them through a variety of weekly assignments that are intensive and academically rigorous.

The tutor meets with the students in small groups (2-3) on a weekly basis and assigns them a series of readings based on a topic. The students must prepare a written assignment for the following week, in which they explore the assigned topic in depth and prepare to present and substantiate their ideas to their peers. The process seems so intense that I get the impression that the work is more like a mini-thesis than a short essay.

This essentially means that the work that the students do is not simply a summary of the topic content. Students must cover the concepts in incredible depth (some critics say that the reading requirement alone means that the topics cannot be covered in any real depth), exploring the philosophical implications of the work, prepare for critique, present controversial ideas and defend them.

There are some limitations of the format, not least of which is that it is time-consuming and resource intensive. In addition, there are other critiques of the tutorial system, including that it doesn’t adequately prepare students for the world of work. However, the stated pedagogical aim of trying to help students learn how to think, together with a process that does seem aligned with this goal, seems to me to be reason enough to explore some aspects of the approach for my ethics module.

Over the next few weeks I will spend some time getting to grips with the Oxford Tutorial and incorporating some of its ideas into my teaching practice, as a way of helping my students develop their thinking and reasoning skills. More on this to come.

Physiotherapy in 2050: Ethical and clinical implications

This post describes a project that I began earlier this week with my 3rd year undergraduate students as part of their Professional Ethics module. The project represents a convergence of a few ideas that have been bouncing around in my head for a couple of years and are now coming together as a result of a proposal that I’m putting together for a book chapter for the Critical Physiotherapy Network. I’m undecided at this point if I’ll develop it into a full research proposal, as I’m currently feeling more inclined to just have fun with it rather than turn it into something that will feel more like work.

The project is premised on the idea that health and medicine – embedded within a broader social construct – will be significantly impacted by rapidly accelerating changes in technology. The question we are looking to explore in the project is: What are the moral, ethical, legal, and clinical implications for physiotherapy practice when the boundaries of medical and health science are significantly shifted as a result of technological advances?

The students will work in small groups that are allocated an area of medicine and health where we are seeing significant change as a result of the integration of advanced technology. Each week in class I will present an idea that is relevant to our Professional Ethics module (for example, the concept of human rights) and then each group will explore that concept within the framework of their topic. So, some might look at how gene therapy could influence how we think about our rights, while others might ask what it even means to be human. I’m not 100% how this is going to play out and will most likely adapt the project as we progress, taking into account student feedback and the challenges we encounter. I can foresee some groups having trouble with certain ethical constructs simply because it may not be applicable to their topic.

Exoskeletons are playing an increasingly important role in neurological rehabilitation.
Exoskeletons playing an increasingly important role in neurological rehabilitation.
The following list and questions aim to stimulate the discussion and to give some idea of what we are looking at (this list is not exhaustive and I’m still playing around with ideas – suggestions are welcome):

  1. Artificial intelligence and algorithmic ethical decision-making. Can computers be ethical? How is ethical reasoning incorporated into machines? How will ethical algorithms impact health, for example, when computers make decisions about organ transplant recipients? Can ethics programmed into machines?
  2. Nanotechnology. As our ability to manipulate our world at the atomic level advances, what changes can we expect to see for physiotherapists and physiotherapy practice? How far can we go with integrating technology into our bodies before we stop being “human”?
  3. Gene therapy. What happens when genetic disorders that provide specialisation areas for physiotherapists are eradicated through gene therapy? What happens when we can “fix” the genetic problems that lead to complications that physiotherapists have traditionally had a significant role in. For example, what will we do when cystic fibrosis is cured? What happens when we have a vaccine for HIV? Or when ALS is little more than an inconvenience?
  4. Robotics. What happens when patients who undergo amputations are fitted with prosthetics that link to the nervous system? When exoskeletons for paralysed patients are common? How much of robotic systems will students need to know about? Will exoskeletons be the new wheelchairs?
  5. Aging. What happens when the aging population no longer ages? How will physiotherapy change as the human lifespan is extended? There is an entire field of physiotherapy devoted to the management of the aging population; what will happen to that? How will palliative care change?
  6. Augmented reality. When we can overlay digital information onto our visual field, what possibilities exist for effective patient management? For education? What happens when that information is integrated with location-based data, so that patient-specific information is presented to us when we are near that patient?
  7. Virtual reality. What will it mean for training when we can build entire hospitals and patient interactions in the virtual world? When we can introduce students to the ICU in their first year? This could be especially useful when we have challenges with finding enough placements for students who need to do clinical rotations.
  8. 3D printing. What happens when we can print any equipment that we need, that is made exactly to the patient’s specifications? How will this affect the cost of equipment distribution to patients? Can 3D printed crutches be recycled? Reused by other patients? What new kinds of equipment can be invented when we are not constrained by the production lines of the companies who traditionally make the tools we use?
  9. Brain-computer interfaces. When patients are able to control computers (and by extension, everything linked to the computer) simply by thinking about it, what does that mean for their roles in the world? What does it mean when someone with a C7 complete spinal cord injury can still be a productive member of society? What does it mean for community re-integration? How will “rehabilitation” change if computer science is a requirement to even understand the tools our patients use?
  10. Quantified self. As we begin to use sensors close to our bodies (inside our phones, watches, etc.) and soon – inside our bodies – we will have access to an unprecedented amount of personal (very personal) data about ourselves. We will be able to use that data to inform decision making about our health and well-being, which will change the patient-therapist relationship. This will most likely have the effect of modifying the power differential between patients and clinicians. How will we deal with that? Are we training students to know what to do with that patient information? To understand how these sensors work?
  11. Processing power. While this is actually something that is linked to every other item in the list, it might warrant it’s own topic purely because everything else depends on the continuous improvements in processing power and parallel reduction in cost.
  12. The internet. I’m not sure about this. While the architecture of the internet itself is unlikely to change much in the next few decades (disregarding the idea that the internet as we know it might be supplanted with something better), who has access to it and how we use it will most certainly change.

An artist's depiction of a nanobot that is smaller than blood cells.
Nanobot smaller than blood cells.
I should state that we will be working under certain assumptions:

  • That the technology will not be uniformly integrated into society and health systems i.e. that wealth disparity or income inequality will directly affect implementation of certain therapies. This will,obviously have ethical and moral implications.
  • That the technology will not be freely available i.e. that corporations will license certain genetic therapies and withhold their use on those who cannot pay the license.
  • That technological progression will continue over time i.e. that regulations will not prevent, for example, further research into stem cell therapy.
  • …we may have to make additional assumptions as we move forward but this is all I can think of now

We’ll probably find that there will be significant overlap in the above topics, since some are specific technologies that will have an influence on other areas. For example, gene therapy and nanotechnology may have an impact on aging; artificial intelligence will impact many areas, as will robotics and computing power. The idea isn’t that these topics are discrete and separate, but that they provide a focus point for discussion and exploration, with the understanding that overlap is inevitable. In fact, overlap is preferable, since it will help us explore relationships between the different areas and to find connections that we maybe were not previously aware of.

Giving patients bad news in virtual spaces where we can control the interaction.
Giving patients bad news in virtual spaces where we can control the interaction.
The activities that the students engage in during this project are informed by the following ideas, which overlap with each other:

  • Authentic learning is a framework for designing learning tasks that lead to deeper engagement by students. Authentic tasks should be complex, collaborative, ill-defined, and completed over long periods.
  • Inquiry-based learning suggests that students should identify challenging questions that are aimed at addressing gaps in their understanding of complex problems. The research that they conduct is a process they go through in order to achieve outcomes, rather than being an end in itself.
  • Project-based learning is the idea that we can use full projects – based in the real world – to discuss and explore the disciplinary content, while simultaneously developing important skills that are necessary for learning in the 21st century.

I should be clear that I’m not really sure what the outcome of this project will be. I obviously have objectives for my students’ learning that relate to the Professional Ethics module but in terms of what we cover, how we cover it, what the final “product” is…these are all still quite fluid. I suppose that, ideally, I would like for us as a group (myself and the students) to explore the various concepts together and to come up with a set of suggestions that might help to guide physiotherapy education (or at least, physiotherapy education as practiced by me) over the next 5-10 years.

Augmented reality has significant potential for education.
Augmented reality has significant potential for education.
So much of physiotherapy practice – and therefore, physiotherapy education – is premised on the idea that what has been important over the last 50 years will continue to be important for the next 50. However, as technology progresses and we see incredible advances in the integration of technology into medicine and health systems, we need to ask if the next 50 years are going to look anything like the last 50. In fact, it almost seems as if the most important skill we can teach our students is how to adapt to a constantly changing world. If this is true, then we may need to radically change what we prioritise in the curriculum, as well as how we teach students to learn. When every fact is instantly available, when algorithms influence clinical decision-making, when amputees are fitted with robotic prosthetics controlled directly via brain-computer interfaces…where does that leave the physiotherapist? This project is a first step (for me) towards at least beginning to think about these kinds of questions.

 

I enjoyed reading (September)

I’m going to be presenting at The Network: Towards Unity for Health conference in Fortaleza, Brazil later this year and so my reading has largely been focused around what I’m thinking of talking about. I haven’t formalised the structure of the presentation yet but will probably publish it here as I figure out what I want to do.

What is public? (Anil Dash)

Public is not simply defined. Public is not just what can be viewed by others, but a fragile set of social conventions about what behaviors are acceptable and appropriate. There are people determined to profit from expanding and redefining what’s public, working to treat nearly everything we say or do as a public work they can exploit. They may succeed before we even put up a fight.

….

What if the public speech on Facebook and Twitter is more akin to a conversation happening between two people at a restaurant? Or two people speaking quietly at home, albeit near a window that happens to be open to the street? And if more than a billion people are active on various social networking applications each week, are we saying that there are now a billion public figures? When did we agree to let media redefine everyone who uses social networks as fair game, with no recourse and no framework for consent?

….

The business models of some of the most powerful forces in society are increasingly dependent on our complicity in making our conversations, our creations, and our communities public whenever they can exploit them. Given that reality, understanding exactly what “public” means is the only way to protect the public’s interest.

 

What is privacy? (danah boyd): Think of this piece as an extension of the piece above, where boyd unpacks the notion of privacy in the context of “public” that Anil Dash wrote about.

The very practice of privacy is all about control in a world in which we fully know that we never have control. Our friends might betray us, our spaces might be surveilled, our expectations might be shattered. But this is why achieving privacy is desirable. People want to be *in* public, but that doesn’t necessarily mean that they want to *be* public. There’s a huge difference between the two. As a result of the destabilization of social spaces, what’s shocking is how frequently teens have shifted from trying to restrict access to content to trying to restrict access to meaning. They get, at a gut level, that they can’t have control over who sees what’s said, but they hope to instead have control over how that information is interpreted. And thus, we see our collective imagination of what’s private colliding smack into the notion of public. They are less of a continuum and more of an entwined hairball, reshaping and influencing each other in significant ways.

….

When powerful actors, be they companies or governmental agencies, use the excuse of something being “public” to defend their right to look, they systematically assert control over people in a way that fundamentally disenfranchises them. This is the very essence of power and the core of why concepts like “surveillance” matter. Surveillance isn’t simply the all-being all-looking eye. It’s a mechanism by which systems of power assert their power. And it is why people grow angry and distrustful. Why they throw fits over beingexperimented on. Why they cry privacy foul even when the content being discussed is, for all intents and purposes, public.

 

Are Google making money from your exercise data?: Exercise activity as digital labour? (Chris Till)

In this article I made a suggestion of what I believe to be a previously untheorised consequence of the large scale tracking of exercise activity by self-tracking devices such as Fitbit and Nike+ and related apps on smart phones.

My suggestion was that this kind of tracking is potentially transforming exercise activity into labour. By synthesising existing analyses of self-tracking and quantified self activities with theories of digital labour I proposed that by converting the physical movement of bodies during exercise into standardised measures which can be analysed, compared and accumulated on a large scale they are made amenable to the extraction of value.

….

Another study conducted by web analytics and privacy group Evidon commissioned by the Financial Times found that data was shared with nearly seventy companies by the twenty most popular health and fitness apps and some of these companies were advertising firms (see graphic below). Although the headline rhetoric often presents a concern for the privacy of users an analysis of the privacy policies of many of the most popular health and fitness tracking apps and devices most allowing “non-personally identifiable information” to be shared and many were ambiguous on whether they permitted sharing of user data.

 

Wearer be warned: Your fitness data may be sold or used against you (Deborah Lupton)

When self-tracking was an activity limited to jotting notes down in a paper journal or diary, this information could easily be kept private. No-one else could know the finer details of one’s sleeping or bowel habits, sex life, diet, heart rate, body weight or efforts to give up smoking.

However when people use digital devices that connect to computing cloud storage facilities or developers’ data archives, the user no longer owns or control their own data. This personal and often very private information becomes part of vast digital data collections that are increasingly used by actors and agents in many different social domains.

Personal health and medical data is now used for much more than just gathering information on oneself for one’s own private reasons. This information is a commodity that can be used for commercial, managerial and governmental purposes and on-sold to third parties.

 

Every little byte counts (Evgeny Morozov)

When Big Data allows us to automate decision-­making, or at least contextualize every decision with a trove of data about its likely consequences, we need to grapple with the question of just how much we want to leave to chance and to those simple, low-tech, unautomated options of democratic contestation and deliberation.

As we gain the capacity to predict and even pre-empt crises, we risk eliminating the very kinds of experimental behaviors that have been conducive to social innovation. Occasionally, someone needs to break the law, engage in an act of civil disobedience or simply refuse to do something the rest of us find useful. The temptation of Big Data lies precisely in allowing us to identify and make such loopholes unavailable to deviants, who might actually be dissidents in disguise.