Patient made Long Covid empowers the patient voice

Successful, patient-driven advocacy and research in Long Covid is contributing to change our understanding of SARS-CoV-2 infection, viral-onset diseases, and knowledge building in medicine and beyond. Events and epistemic shifts surrounding the rise of Long Covid represent a massive opportunity for empowering the patient voice. Strategies that have proven key to grassroots Long Covid advocacy in our digital era could be further explored and expanded across different patient communities. It is my hope that patient-centred expertise will be further incorporated into the biomedical community. This would contribute to critical changes in medical awareness of chronic diseases and patient care.

Facilitating Patient Voice: A Case Study on Advance Directives and the Primary Health Nurse

<p>Advance directives are just one aspect of advance care planning. According to the New Zealand Nurses Organisation, advance directives are becoming increasingly common in New Zealand. Nurses are well positioned to take on an increasing role in advance directives, particularly in view of the expected burgeoning older population to which New Zealand is no exception. The literature suggests there is a role for primary health nurses in advance directives but no literature to date is available on this role in the New Zealand context. The aim of this research was to determine primary health nurses' role in advance directives. A qualitative case study research approach was used to explore the knowledge, attitudes, experiences, and involvement of primary health nurses in advance directives. Semi-structured interviews were conducted with 13 senior primary health nurses from one New Zealand province. Two propositions informed the analysis: 1) primary health nurses currently do not have a role in advance directives; and 2) primary health nurses believe that advance directives can promote effective-end-of-life care. Watson's Theory of Human Caring was used as the theoretical framework to guide the study. Three themes were identified from the analysis: encountering challenges, facilitating patient voice, and valuing the person. The findings revealed that primary health nurses had little or no significant experience or involvement in advance directives. Participants described knowledge inconsistencies about advance directives, in particular to related legalities. Nevertheless, participants had positive attitudes towards advance directives and believed there was a role for primary health nurses in early advance directive conversations. They emphasised the importance of teamwork and envisaged their role as one of support to both the patient and doctor. Caring praxis underpinned the nurses' positive attitudes towards advance directives. These caring behaviours sustained the core values of patient autonomy and patient advocacy considered fundamental to sensitive advance directive conversations. Many challenges were identified in terms of the nurse's role in advanced directives. These included cultural considerations for Māori in order to respect The Treaty of Waitangi principles and attending to the cultural needs of the individual Pacific Island groupings. Other challenges included unclear guidelines, unclear role delineation, ethical dilemmas and fragmented or complex communication issues across the primary/secondary health sector. Results of this study may inform nurses of the need to establish nurse–patient relationships built upon trust and positive regard in order to support patients in advanced directive discussions. Implications for nurse educators include incorporating education directed at empowering nurses to participate in ethical decision making to enhance patients' end-of-life care. Given the importance of the multi-disciplinary responsibility in establishing advance directives, there is a need for further research regarding how health professionals could function together in the role of advance directive communication to best meet patients' needs.</p>

Facilitating Patient Voice: A Case Study on Advance Directives and the Primary Health Nurse

<p>Advance directives are just one aspect of advance care planning. According to the New Zealand Nurses Organisation, advance directives are becoming increasingly common in New Zealand. Nurses are well positioned to take on an increasing role in advance directives, particularly in view of the expected burgeoning older population to which New Zealand is no exception. The literature suggests there is a role for primary health nurses in advance directives but no literature to date is available on this role in the New Zealand context. The aim of this research was to determine primary health nurses' role in advance directives. A qualitative case study research approach was used to explore the knowledge, attitudes, experiences, and involvement of primary health nurses in advance directives. Semi-structured interviews were conducted with 13 senior primary health nurses from one New Zealand province. Two propositions informed the analysis: 1) primary health nurses currently do not have a role in advance directives; and 2) primary health nurses believe that advance directives can promote effective-end-of-life care. Watson's Theory of Human Caring was used as the theoretical framework to guide the study. Three themes were identified from the analysis: encountering challenges, facilitating patient voice, and valuing the person. The findings revealed that primary health nurses had little or no significant experience or involvement in advance directives. Participants described knowledge inconsistencies about advance directives, in particular to related legalities. Nevertheless, participants had positive attitudes towards advance directives and believed there was a role for primary health nurses in early advance directive conversations. They emphasised the importance of teamwork and envisaged their role as one of support to both the patient and doctor. Caring praxis underpinned the nurses' positive attitudes towards advance directives. These caring behaviours sustained the core values of patient autonomy and patient advocacy considered fundamental to sensitive advance directive conversations. Many challenges were identified in terms of the nurse's role in advanced directives. These included cultural considerations for Māori in order to respect The Treaty of Waitangi principles and attending to the cultural needs of the individual Pacific Island groupings. Other challenges included unclear guidelines, unclear role delineation, ethical dilemmas and fragmented or complex communication issues across the primary/secondary health sector. Results of this study may inform nurses of the need to establish nurse–patient relationships built upon trust and positive regard in order to support patients in advanced directive discussions. Implications for nurse educators include incorporating education directed at empowering nurses to participate in ethical decision making to enhance patients' end-of-life care. Given the importance of the multi-disciplinary responsibility in establishing advance directives, there is a need for further research regarding how health professionals could function together in the role of advance directive communication to best meet patients' needs.</p>

“Could you give us an idea on what we are all doing here?” the Patient Voice in Cancer Research (PVCR) starting the journey of involvement in Ireland

Background Involving patients and their carers in research has become more common, as funders demand evidence of involvement. The ‘Patient Voice in Cancer Research’ (PVCR) is an initiative led by University College Dublin (UCD) in Ireland. It encourages and enables people affected by cancer, and their families to become involved in shaping and informing the future of cancer research across the island of Ireland. Its aim is to identify the questions and needs that matter most to (i) people living with a cancer diagnosis, and (ii) those most likely to improve the relevance of cancer research. The initiative commenced in April 2016. Methods This paper presents a reflective case study of our journey thus far. We outline three key stages of the initiative and share what we have learnt. At the core of PVCR, is a focus on building long-term relationships. Results We have developed over time an inclusive initiative that is built on trust and respect for everyone’s contributions. This work is grounded on collegiality, mixed with a good sense of humour and friendship. Conclusion The development of PVCR has taken time and investment. The benefits and impact of undertaking this work have been immensely rewarding and now require significant focus as we enhance cancer research across the island of Ireland.

Classifying patient and professional voice in social media health posts

Background Patient-based analysis of social media is a growing research field with the aim of delivering precision medicine but it requires accurate classification of posts relating to patients’ experiences. We motivate the need for this type of classification as a pre-processing step for further analysis of social media data in the context of related work in this area. In this paper we present experiments for a three-way document classification by patient voice, professional voice or other. We present results for a convolutional neural network classifier trained on English data from two different data sources (Reddit and Twitter) and two domains (cardiovascular and skin diseases). Results We found that document classification by patient voice, professional voice or other can be done consistently manually (0.92 accuracy). Annotators agreed roughly equally for each domain (cardiovascular and skin) but they agreed more when annotating Reddit posts compared to Twitter posts. Best classification performance was obtained when training two separate classifiers for each data source, one for Reddit and one for Twitter posts, when evaluating on in-source test data for both test sets combined with an overall accuracy of 0.95 (and macro-average F1 of 0.92) and an F1-score of 0.95 for patient voice only. Conclusion The main conclusion resulting from this work is that combining social media data from platforms with different characteristics for training a patient and professional voice classifier does not result in best possible performance. We showed that it is best to train separate models per data source (Reddit and Twitter) instead of a model using the combined training data from both sources. We also found that it is preferable to train separate models per domain (cardiovascular and skin) while showing that the difference to the combined model is only minor (0.01 accuracy). Our highest overall F1-score (0.95) obtained for classifying posts as patient voice is a very good starting point for further analysis of social media data reflecting the experience of patients.