Papers by Jennifer Johannesen
The Ontario SPOR Support Unit’s Patient Partnership Working Group (PPWG) has commissioned a patie... more The Ontario SPOR Support Unit’s Patient Partnership Working Group (PPWG) has commissioned a patient-led study to investigate patient views on “ladders of engagement” frameworks, using IAP2’s Public Participation Spectrum (IAP2 Spectrum) as an example. Objectives of the study include determining what relevance such frameworks hold for patients and discovering if there is opportunity to reimagine a framework from a patient perspective. To gain insights into these questions, eight (8) patients were interviewed, the findings of which are discussed in this paper. Conversations with engaged patients revealed diverse motives, preferences, and intentions related to engaging in research. The participants had differing understandings of key concepts such as partnership, meaningfulness, and what constitutes ‘good’ engagement. As a result, the interviewed patients did not relate easily to the IAP2 Spectrum. They felt it did not accurately reflect their experiences, and some thought it was not a desirable or helpful model from their perspective. Some patients were in agreement, however, that the IAP2 Spectrum may be useful in familiarizing newly engaged patients with researchers’ views on engagement. As a way to more easily talk about and analyze patient views, the participants were identified as belonging to one of three groups: patients who volunteer to provide their perspectives and feedback; patients with pre-existing professional-level research experience who volunteer their skills; and patients who seek to shape the practice of patient engagement by providing consulting to researchers and health institutions and organizations. Sorting the participants in this way was instructive as it helped to illuminate some of the tensions within the engaged patient community, particularly as they relate to the increasing “professionalization” of patients. In particular, participants were divided on whether meaningful contribution to engagement activities requires full partnership with researchers. In addition, there was concern among some participants that research-related training for patients may affect patients’ abilities to maintain their unique patient perspectives, considering the intensive socialization into research practice that training provides. Another notable finding was that some participants felt that patients who advise on the practice of patient engagement do not necessarily represent the views and preferences of all engaged patients. While there are no easy solutions to resolving these tensions, this study helps to shed light on patient views on engagement in research and offers ideas for further investigation.
Developmental Medicine & Child Neurology
This is an outstanding book that should be in every department of paediatrics and child health fo... more This is an outstanding book that should be in every department of paediatrics and child health for all staff to access, not only those working in neurodisability. It is outstanding because it addresses real 'lived experiences' of children and families alongside 'worked examples' of the practical challenges confronting the clinician. Fifty-nine authors write from Rwanda, Canada, the USA, Australia, and across Europe. It sets a logical approach across thirty-one chapters in six sections and an epilogue. Section A sets the scene, attuning moral and ethical thinking, before moving to Section B, 'Early days, the start of the different development journey'. Section C approaches ethical issues in addressing families' priorities, before Section D, 'Respecting social and cultural values'. The last three sections consider ethics in relation to therapies, rehabilitation, and interventions, then ethical issues in specific conditions and contexts, before concluding with considerations around emerging independence and preparing for adulthood. The book demands concentration. It is not one to read from cover to cover in one sitting. However, the comprehensive index facilitates exploring the contents. How ethics has changed since I graduated as a young doctor in 1967! I can't recall much teaching on the subject, but since then there has been an explosion of ethical committees of one kind or another, alongside strength in the discipline of medical ethics. So, what reflections on the book can I offer through what I have witnessed? The book says little on the management of ethical issues in organisations. As President of the British Medical Association I attended its national Ethics Committee, with its members comprising clinicians, lawyers, bioethicists, theologians from different faiths, patient representatives and officials producing impactful publications. The range of issues discussed is formidable, most recently on 'End of life care and physician-assisted dying' (). Issues now on the horizon include the ethics and legality of three parent embryos, and the implications of human-pig hybrids. At the institutional level, as Director of Clinical R&D at Great Ormond Street Hospital in London I was responsible for managing over 1500 research projects. This required a dedicated R&D Office with people and expertise, alongside computerised systems to register, track, and
Ultrasound in Obstetrics and Gynecology, 2004
To determine what women value when receiving news of a pregnancy abnormality detected by ultrasou... more To determine what women value when receiving news of a pregnancy abnormality detected by ultrasound. Women who had a pregnancy complication detected sonographically in the year 2000 were asked to complete a survey of 21 questions measuring the importance of various factors related to the receipt of bad news. Of the target sample of 117 women who agreed to participate, 76 (64.9%) returned completed surveys. Cases included serious anomalies (67%) and soft markers/obstetric complications (33%). Responses to questions on 'information quality', 'prompt provision of information', 'information-provider behavior' and 'information provision environment' showed that women attached the most importance to information quality, much more so than to promptness. Speed was even less important than information-provider empathy. Answers concerning use of the terms 'fetus' or 'baby' revealed greater variation in preferences than any other. Privacy was the most important environmental variable, more important than some information quality variables, or any promptness variable. Intervening variables considered included demographic variables and the seriousness of the prognosis. Education was the most useful predictor of preferences, with highly educated women generally placing less value on environment and some information quality variables, and having different preferences concerning the terms 'fetus' and 'baby'. Our findings shed some light on what is important to women who face bad news. Although more research is needed in this important area, we hope that our findings may assist institutions and caregivers in establishing guidelines for the effective and considerate communication of bad news.
The Ontario SPOR Support Unit’s Patient Partnership Working Group (PPWG) has commissioned a patie... more The Ontario SPOR Support Unit’s Patient Partnership Working Group (PPWG) has commissioned a patient-led study to investigate patient views on “ladders of engagement” frameworks, using IAP2’s Public Participation Spectrum (IAP2 Spectrum) as an example. Objectives of the study include determining what relevance such frameworks hold for patients and discovering if there is opportunity to reimagine a framework from a patient perspective. To gain insights into these questions, eight (8) patients were interviewed, the findings of which are discussed in this paper.
Conversations with engaged patients revealed diverse motives, preferences, and intentions related to engaging in research. The participants had differing understandings of key concepts such as partnership, meaningfulness, and what constitutes ‘good’ engagement. As a result, the interviewed patients did not relate easily to the IAP2 Spectrum. They felt it did not accurately reflect their experiences, and some thought it was not a desirable or helpful model from their perspective. Some patients were in agreement, however, that the IAP2 Spectrum may be useful in familiarizing newly engaged patients with researchers’ views on engagement.
As a way to more easily talk about and analyze patient views, the participants were identified as belonging to one of three groups: patients who volunteer to provide their perspectives and feedback; patients with pre-existing professional-level research experience who volunteer their skills; and patients who seek to shape the practice of patient engagement by providing consulting to researchers and health institutions and organizations. Sorting the participants in this way was instructive as it helped to illuminate some of the tensions within the engaged patient community, particularly as they relate to the increasing “professionalization” of patients. In particular, participants were divided on whether meaningful contribution to engagement activities requires full partnership with researchers. In addition, there was concern among some participants that research-related training for patients may affect patients’ abilities to maintain their unique patient perspectives, considering the intensive socialization into research practice that training provides. Another notable finding was that some participants felt that patients who advise on the practice of patient engagement do not necessarily represent the views and preferences of all engaged patients.
While there are no easy solutions to resolving these tensions, this study helps to shed light on patient views on engagement in research and offers ideas for further investigation.
Published in Ars Medica (Toronto). Personal narrative about signing a Do Not Resuscitate order.
Although physician-assisted suicide (PAS) is legal in several jurisdictions around the world, deb... more Although physician-assisted suicide (PAS) is legal in several jurisdictions around the world, debate about its merits and implementation is far from settled. This debate has special, timely significance in Canada, as new PAS legislation is imminent. (Controversial recommendations from the Joint Special Committee on Physician-Assisted Dying include PAS for mature minors, PAS in advance directives, and PAS for people with mental illness.)
Slippery slope concerns are often at the centre of this debate—opponents worry that legalizing PAS in any form, however acceptable now, will inevitably lead to practices that are unacceptable. Concerns include risk of abuse and mistake, expansion of criteria, and an unobstructed path to euthanasia. Opponents also observe that those who support PAS on the basis of autonomy and suffering (common foundational arguments) are logically, on principle, committed to its expansion.
As the literature reveals, the slippery slope debate is confusing and often misunderstood. This essay seeks to achieve clarity by investigating the two types of slippery slope arguments—empirical and logical. The validity of each slippery slope argument is considered, with the following results. Empirical slippery slope concerns have not been validated. Recent data from Oregon and Europe neither support nor disprove slippery slope claims conclusively. Low numbers of usage of PAS, particularly in Oregon, reduce fears. Logical slippery slope concerns, while theoretically compelling, can be assuaged by drawing a bright line between what is acceptable and what is unacceptable. Consistency of principle need not be the highest value if other compelling reasons exist to make this distinction. Generally, slippery slope arguments are addressed (by proponents of PAS) by pointing to qualifying thresholds or criteria, also known as safeguards.
Two particular safeguards are then examined—determinations of capacity and suffering, respectively. Some questions addressed include:
On what basis are physicians expected to assess capacity?
On what basis are physicians expected to assess suffering, especially if terminal illness is not a criterion?
To what extent can physicians make these determinations without also judging the patient’s quality of life?
In exploring answers to these questions, significant doubt is raised as to the extent to which these criteria function as safeguards against slippery slope concerns. Physicians are faced with the near-impossible task of assessing capacity and determining suffering without inserting their personal judgment of whether the person really ought to die, and in this way. In addition, they must do so without meaningful guidelines to assist in making these determinations with fairness and consistency. Other than in obvious cases of incapacity, why would a physician ever say no? More importantly, how could a physician ever say no without risk of accusation of inappropriately judging another’s suffering? Indeed, even if a physician denies a request a more agreeable physician may be found.
I conclude that, with the legalization of PAS in any form–particularly the form proposed in Canada –the promise of safeguards as protections proves illusory.
OBJECTIVE: To determine what women value when receiving news of a pregnancy abnormality detected ... more OBJECTIVE: To determine what women value when receiving news of a pregnancy abnormality detected by ultrasound.METHODS: Women who had a pregnancy complication detected sonographically in the year 2000 were asked to complete a survey of 21 questions measuring the importance of various factors related to the receipt of bad news. Of the target sample of 117 women who agreed to participate, 76 (64.9%) returned completed surveys. Cases included serious anomalies (67%) and soft markers/obstetric complications (33%).RESULTS: Responses to questions on 'information quality', 'prompt provision of information', 'information-provider behavior' and 'information provision environment' showed that women attached the most importance to information quality, much more so than to promptness. Speed was even less important than information-provider empathy. Answers concerning use of the terms 'fetus' or 'baby' revealed greater variation in preferences than any other. Privacy was the most important environmental variable, more important than some information quality variables, or any promptness variable. Intervening variables considered included demographic variables and the seriousness of the prognosis. Education was the most useful predictor of preferences, with highly educated women generally placing less value on environment and some information quality variables, and having different preferences concerning the terms 'fetus' and 'baby'.CONCLUSIONS: Our findings shed some light on what is important to women who face bad news. Although more research is needed in this important area, we hope that our findings may assist institutions and caregivers in establishing guidelines for the effective and considerate communication of bad news.Copyright 2003 ISUOG. Published by John Wiley & Sons, Ltd.
Books by Jennifer Johannesen
Have you ever • Disagreed with colleagues over a proposed course of treatment for a child? • Cons... more Have you ever • Disagreed with colleagues over a proposed course of treatment for a child? • Considered ways to ‘bump’ a child up on a waiting list to speed up their assessment? • Wondered how to deal with a family that repeatedly fails to keep clinical appointments?
From the Foreword: “This is a must-have book for everyone who works in the fi eld of clinical childhood disability. There is something for all clinicians, therapists, nurses, and doctors whether in training or established in clinical practice for many years. This book ‘works’ because it is full of real stories of the situations we will all recognise from our own practice, written and edited by internationally renowned and respected clinicians and others with direct experience, who share their ‘workings out’ of the ethical issues discussed.” Dr Karen Horridge, Chair, British Academy of Childhood Disability
Published by Mac Keith Press 2016
Talks by Jennifer Johannesen
As enthusiasm for PPI (Patient and Public Involvement) in health research increases, the tensions... more As enthusiasm for PPI (Patient and Public Involvement) in health research increases, the tensions and conflicts experienced by both patients and researchers also become amplified. In this session, Jennifer examines some of PPI’s problems by considering fundamental questions such as what is happening, why is it happening, and who is benefiting? Although it may feel uncomfortable, answering these questions may lead to a better understanding of why PPI’s contradictions are difficult to resolve.
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Papers by Jennifer Johannesen
Conversations with engaged patients revealed diverse motives, preferences, and intentions related to engaging in research. The participants had differing understandings of key concepts such as partnership, meaningfulness, and what constitutes ‘good’ engagement. As a result, the interviewed patients did not relate easily to the IAP2 Spectrum. They felt it did not accurately reflect their experiences, and some thought it was not a desirable or helpful model from their perspective. Some patients were in agreement, however, that the IAP2 Spectrum may be useful in familiarizing newly engaged patients with researchers’ views on engagement.
As a way to more easily talk about and analyze patient views, the participants were identified as belonging to one of three groups: patients who volunteer to provide their perspectives and feedback; patients with pre-existing professional-level research experience who volunteer their skills; and patients who seek to shape the practice of patient engagement by providing consulting to researchers and health institutions and organizations. Sorting the participants in this way was instructive as it helped to illuminate some of the tensions within the engaged patient community, particularly as they relate to the increasing “professionalization” of patients. In particular, participants were divided on whether meaningful contribution to engagement activities requires full partnership with researchers. In addition, there was concern among some participants that research-related training for patients may affect patients’ abilities to maintain their unique patient perspectives, considering the intensive socialization into research practice that training provides. Another notable finding was that some participants felt that patients who advise on the practice of patient engagement do not necessarily represent the views and preferences of all engaged patients.
While there are no easy solutions to resolving these tensions, this study helps to shed light on patient views on engagement in research and offers ideas for further investigation.
Slippery slope concerns are often at the centre of this debate—opponents worry that legalizing PAS in any form, however acceptable now, will inevitably lead to practices that are unacceptable. Concerns include risk of abuse and mistake, expansion of criteria, and an unobstructed path to euthanasia. Opponents also observe that those who support PAS on the basis of autonomy and suffering (common foundational arguments) are logically, on principle, committed to its expansion.
As the literature reveals, the slippery slope debate is confusing and often misunderstood. This essay seeks to achieve clarity by investigating the two types of slippery slope arguments—empirical and logical. The validity of each slippery slope argument is considered, with the following results. Empirical slippery slope concerns have not been validated. Recent data from Oregon and Europe neither support nor disprove slippery slope claims conclusively. Low numbers of usage of PAS, particularly in Oregon, reduce fears. Logical slippery slope concerns, while theoretically compelling, can be assuaged by drawing a bright line between what is acceptable and what is unacceptable. Consistency of principle need not be the highest value if other compelling reasons exist to make this distinction. Generally, slippery slope arguments are addressed (by proponents of PAS) by pointing to qualifying thresholds or criteria, also known as safeguards.
Two particular safeguards are then examined—determinations of capacity and suffering, respectively. Some questions addressed include:
On what basis are physicians expected to assess capacity?
On what basis are physicians expected to assess suffering, especially if terminal illness is not a criterion?
To what extent can physicians make these determinations without also judging the patient’s quality of life?
In exploring answers to these questions, significant doubt is raised as to the extent to which these criteria function as safeguards against slippery slope concerns. Physicians are faced with the near-impossible task of assessing capacity and determining suffering without inserting their personal judgment of whether the person really ought to die, and in this way. In addition, they must do so without meaningful guidelines to assist in making these determinations with fairness and consistency. Other than in obvious cases of incapacity, why would a physician ever say no? More importantly, how could a physician ever say no without risk of accusation of inappropriately judging another’s suffering? Indeed, even if a physician denies a request a more agreeable physician may be found.
I conclude that, with the legalization of PAS in any form–particularly the form proposed in Canada –the promise of safeguards as protections proves illusory.
Books by Jennifer Johannesen
From the Foreword: “This is a must-have book for everyone who works in the fi eld of clinical childhood disability. There is something for all clinicians, therapists, nurses, and doctors whether in training or established in clinical practice for many years. This book ‘works’ because it is full of real stories of the situations we will all recognise from our own practice, written and edited by internationally renowned and respected clinicians and others with direct experience, who share their ‘workings out’ of the ethical issues discussed.” Dr Karen Horridge, Chair, British Academy of Childhood Disability
Published by Mac Keith Press 2016
Talks by Jennifer Johannesen
Conversations with engaged patients revealed diverse motives, preferences, and intentions related to engaging in research. The participants had differing understandings of key concepts such as partnership, meaningfulness, and what constitutes ‘good’ engagement. As a result, the interviewed patients did not relate easily to the IAP2 Spectrum. They felt it did not accurately reflect their experiences, and some thought it was not a desirable or helpful model from their perspective. Some patients were in agreement, however, that the IAP2 Spectrum may be useful in familiarizing newly engaged patients with researchers’ views on engagement.
As a way to more easily talk about and analyze patient views, the participants were identified as belonging to one of three groups: patients who volunteer to provide their perspectives and feedback; patients with pre-existing professional-level research experience who volunteer their skills; and patients who seek to shape the practice of patient engagement by providing consulting to researchers and health institutions and organizations. Sorting the participants in this way was instructive as it helped to illuminate some of the tensions within the engaged patient community, particularly as they relate to the increasing “professionalization” of patients. In particular, participants were divided on whether meaningful contribution to engagement activities requires full partnership with researchers. In addition, there was concern among some participants that research-related training for patients may affect patients’ abilities to maintain their unique patient perspectives, considering the intensive socialization into research practice that training provides. Another notable finding was that some participants felt that patients who advise on the practice of patient engagement do not necessarily represent the views and preferences of all engaged patients.
While there are no easy solutions to resolving these tensions, this study helps to shed light on patient views on engagement in research and offers ideas for further investigation.
Slippery slope concerns are often at the centre of this debate—opponents worry that legalizing PAS in any form, however acceptable now, will inevitably lead to practices that are unacceptable. Concerns include risk of abuse and mistake, expansion of criteria, and an unobstructed path to euthanasia. Opponents also observe that those who support PAS on the basis of autonomy and suffering (common foundational arguments) are logically, on principle, committed to its expansion.
As the literature reveals, the slippery slope debate is confusing and often misunderstood. This essay seeks to achieve clarity by investigating the two types of slippery slope arguments—empirical and logical. The validity of each slippery slope argument is considered, with the following results. Empirical slippery slope concerns have not been validated. Recent data from Oregon and Europe neither support nor disprove slippery slope claims conclusively. Low numbers of usage of PAS, particularly in Oregon, reduce fears. Logical slippery slope concerns, while theoretically compelling, can be assuaged by drawing a bright line between what is acceptable and what is unacceptable. Consistency of principle need not be the highest value if other compelling reasons exist to make this distinction. Generally, slippery slope arguments are addressed (by proponents of PAS) by pointing to qualifying thresholds or criteria, also known as safeguards.
Two particular safeguards are then examined—determinations of capacity and suffering, respectively. Some questions addressed include:
On what basis are physicians expected to assess capacity?
On what basis are physicians expected to assess suffering, especially if terminal illness is not a criterion?
To what extent can physicians make these determinations without also judging the patient’s quality of life?
In exploring answers to these questions, significant doubt is raised as to the extent to which these criteria function as safeguards against slippery slope concerns. Physicians are faced with the near-impossible task of assessing capacity and determining suffering without inserting their personal judgment of whether the person really ought to die, and in this way. In addition, they must do so without meaningful guidelines to assist in making these determinations with fairness and consistency. Other than in obvious cases of incapacity, why would a physician ever say no? More importantly, how could a physician ever say no without risk of accusation of inappropriately judging another’s suffering? Indeed, even if a physician denies a request a more agreeable physician may be found.
I conclude that, with the legalization of PAS in any form–particularly the form proposed in Canada –the promise of safeguards as protections proves illusory.
From the Foreword: “This is a must-have book for everyone who works in the fi eld of clinical childhood disability. There is something for all clinicians, therapists, nurses, and doctors whether in training or established in clinical practice for many years. This book ‘works’ because it is full of real stories of the situations we will all recognise from our own practice, written and edited by internationally renowned and respected clinicians and others with direct experience, who share their ‘workings out’ of the ethical issues discussed.” Dr Karen Horridge, Chair, British Academy of Childhood Disability
Published by Mac Keith Press 2016