Deliberation and Participation in Health and Health Care

… PHR is to empower these stakeholders by fostering their critical health literacy, which means that they have the capacities to change, individually or as a group, the circumstances that influence their health by themselves (Wright 2013). This becomes clear in the stage models of participation that introduce “collective action”, in which stakeholders pursue their own research, as highest goal (Cornwall 2008; Wright 2010; Unger 2012).

In my project, I investigate the limits of this conception of participation in context of patient organizations (PO) participating in research projects. The aim of my project is to assess the actual needs and expectations of PO considering participation and deliberation in health research. The reason for this is that PO we collaborate with in context of the PANDORA-project (www.pandora-forscht.de) have indicated that their needs and expectations as well as those of their members differ significantly at times from the dominant understanding of empowerment and participation in PHR.

To pursue my aim, I deal with the concept of participation on a normative-conceptual and an empirical level. The first step, which I would like to present at the Autumn School, investigates the normative consideration that the success of PHR under the current dominant conception depends on making strong demands on stakeholders. They not only need to acquire (digital) health literacy to properly cope with their illness (Nutbeam 2000; Smith & Magnani 2019) but also research and data literacy, to name just two, to successfully participate as (co-)decision-makers and co-researchers. Therefore, I aim to develop an alternative conception in which the various competencies that stakeholders already possess are brought together with the purpose of empowering patients in context of their daily lives: e.g., the research literacy of researchers, the context-specific knowledge and health literacy of patients as well as networking capabilities of patient organizations.

In the second step, which I hope to develop further in joint work with the other participants, I analyze how the developed critique at the dominant conception of PHR can be translated in concrete practices of PHR. For this purpose, I ask, within the context of patient organizations that participate in research projects, which methods for participatory research allow for the integration of the different competencies of stakeholders.

Literature:
Cornwall, A. (2008). Unpacking “Participation” models, meanings and practices. Community Dev J 43(3): 269–283.

International Collaboration for Participatory Health Research (ICPHR). (2013). Position Paper 1: What is Participatory Health Research? Version: Mai 2013. Berlin: International Collaboration for Participatory Health Research.

Nutbeam, D. (2000). Health literacy as a public health goal: a challenge for contemporary health edu-cation and communication strategies into the 21st century. Health Promotion International 15(3): 259–267. https://doi.org/10.1093/heapro/15.3.259

Sattler, C., Rommel, J., Chen C., et al. (2021). Participatory research in times of COVID-19 and beyond: Adjusting your methodological toolkits. One Earth 5: 62–73. https://doi.org/10.1016/j.oneear.2021.12.006

Smith B., Magnani J.W. (2019). New technologies, new disparities: The intersection of electronic health and digital health literacy. Int J Cardiol. 292:2 80-282. https://doi.org/10.1016/j.ijcard.2019.05.066

von Unger, H. (2012). Participatory Health Research: Who Participates in What?. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 13(1): Art. 7. https://doi.org/10.17169/fqs-13.1.1781

Wright, M. T. (Ed.) (2010). Partizipative Qualitätsentwicklung in der Gesundheitsförderung und Prävention. Bern: Hans Huber.
Wright, M.T. (2013). Was ist Partizipative Gesundheitsforschung? Prävention und Gesundheitsförderung 3(8): 122–131.

…a scoping review to describe engagement methodologies and approaches that have been used for HIS in different contexts.

Methods
We searched three online databases namely PubMed, Web of Science and Google Scholar. Studies that were considered eligible are those that were published in English and from the year 2000. Data was extracted and charted under the following themes: study context, approaches and tools/medium of engagement.

Results
Our search yielded 10 eligible studies which were conducted across eight countries. The main engagement approaches reported in the studies reviewed included workshops, consultations and sensitization/information giving meetings with a wide range of stakeholders. The workshops and consultative meetings mostly involved key stakeholders who would have/had a role in either the design, implementation, review and/or regulation of HIS such as members of research ethics committees and regulatory bodies, ministry of health officials, HIS researchers and community representatives among others. Potential HIS volunteers and community members were mostly engaged using sensitization/information giving meetings. Some of the tools used during the engagement meetings included presentation of information about HIS (including the use of participants empathy maps and journey maps), videos on HIS, semi-structured discussions and social media.

Conclusion
While various engagement approaches can be used to engage stakeholders and communities in contexts where HIS are to be implemented, the use of relevant approaches can be invaluable in identifying issues that need to be taken into consideration during the design and implementation of HIS.

*Co-authors: Dorcas Kamuya, Susan Bull, Katherine Littler, Vicki Marsh and Primus Che Chi

… Being in the first year of my (part-time) PhD, my project is still taking shape. To inform its direction, I have just completed a scoping review to map what is presently known about parents’ service experiences and needs in relation to genetic testing (of any form) for rare diseases. This review has identified key aspects of care important to parents, and numerous unmet needs long-standing in nature. To validate these findings and identify research priorities, I aim to subsequently consult with parents.

With parent engagement a strong focus throughout my project, I am interested in learning about how online methodologies can be successfully deployed to facilitate participation and group discussion. My research group has previously found it challenging to convene in-person focus groups and workshops with parents of children with genetic conditions, as these children often have complex and high care needs. Online approaches may enhance participation, and the impact of the work in turn.

As a student interested in developing expertise in participatory research methods, the unique learning opportunities this course affords has the potential to shape the direction of my current and future projects, as well as the impact of our research group more broadly.

… uncovered striking knowledge deficits on medical, ethical and legal aspects of precaution- ary documents among medical doctors, professional caregivers and other HCP. However, training needs varied according to the health sector. For example, the two biggest groups in the sample (that is medical doctors and professional caregivers), (a) differ in their knowledge levels on pre- cautionary documents, (b) in the areas they would like to inform themselves further and (c) in the training formats they would like to participate.

Apart from these differences, an important similarity emerged between the distinct groups of HCP: The vast majority of all interviewed HCP get their information on precautionary documents from researching non-official, third party pages on the internet. Given the large amount of Ger- man-speaking websites that offer information on precautionary documents in rather disguised language and in a non-user-friendly way, a project’s own training website is put up in a second step. This open-access website (www.vorausverfügt.de) aims to strengthen HCP’s health literacy by combining visualized showcases, quizzes and expert interviews with bundled information on ethical, legal and medical aspects of precautionary documents. Perspectives from all concerned parties (that is patients, medical doctors, nursing staff and relatives) are taken into account and can be discovered in an interactive way. By providing this website, HCP’s have the opportunity to educate themselves further in an interactive manner and flexible in time and place – a factor that is not only important due to the Corona pandemic but also especially important for most HCP facing shift work.

In the ongoing process, it needs to be considered that HCP are a heterogeneous group of people, not only in terms of the sector they belong. Different education levels and demands for simple and foreign languages need to be taken into account as well. After putting the website up (ex- pected in autumn 2022), the presented content and usability will be evaluated in a third step by surveying different groups of HCP using a mixed-method design.

… they were called upon for their contribution in certain temporalities. This lessened the hierarchies which are usually experienced during these meetings.

In this case of the researchers, the online format allowed us to experiment a new means of conducting ethnography. In this online space, we presented ourselves to the healthcare providers and then turned off our cameras and microphones in order not to interfere in these meetings. Therefore, our presence was “silent” but also “blind.” With the difference of in-presence formats, our presence often forgotten, and allowed healthcare providers to have their “tongues were loosened” even in our presence.

This contribution will therefore focus on the potential advantage in using online formats to increase participation in the hospital space, even with existing and pernicious hierarchies. We will also discuss the effects on the process of the research itself, including this new means of conducting research. However, in order to give a balanced view, it will also be important to elaborate the emotional toll it took the researchers that might otherwise have been mitigated through in-person presence.

1) Fricker, M. (2017). Epistemic Contribution as a Central Human Capability. In Equal society—Essays on equality in theory and practice.

… Globally, there is growing evidence that deliberative democracy-style community engagement is an effective complement to existing consultation strategies and one that enable public engagement of adequate depths to obtain useful input on complex questions, whilst concurrently building public trust. Nonetheless, almost all empirical evidence on deliberative democracy in the context of genomic research and biobanking are from advanced countries settings. Consequently, there is currently limited to no empirical research in many low-income contexts such as sub-Saharan Africa on the subject.

Methodology: Using a mixed method approach, this study aims to examine deliberative democracy as a potential tool for community engagement through which the public can directly be involved in genomic research and biobanking policy decisions in useful ways in the context of Sub-Saharan Africa; and to propose a framework for its use. Specifically, the study aims to use a deliberative approach to develop meaningful and informed public input on the issue of data sharing in the context of genomic research and biobanking. The study also aims to examine the process and effect of deliberation on opinion and explore stakeholders’ perspectives on using deliberative democracy-style of community engagement in genomic research and biobanking in Sub-Saharan Africa.

… the most effective treatment to improve daytime sleepiness, quality of life, hypertension, cognitive performance and the risk of accidents. The therapy effect depends strongly on the patient’s adherence. However, due to the tolerance problems, there is a high treatment discontinuation rate, even though positive health effects can only be expected with long-term, regular using during sleep.

The project ¹ brings together multidisciplinary stakeholders with the overarching aim to advance care and research in OSA. Patient and public participation is envisioned to improve patient centricity and engagement in OSA research by involving them in prioritizing research topics, providing continuous bi-directional information flow and exchanging of ideas as well as evaluating the outcome of the research for a better, more patient-centered healthcare for OSA patients. In order to achieve these aims, a stable OSA-patient and public consultancy group (PPCG) will be established to provide continuous input.

A participatory and empirically based ethical approach will be employed. Inspired by the well-established methods of stakeholder consensus conference and citizen juries, a PPCG will be engaged to have a continuous exchange of ideas. For this, three 2-days meetings are envisioned structured as workshops to identify preferred communication tools for continuous participation and information flow. In the first meeting, most salient key issues for the PPCG will be identified. The second meeting will focus on issues of broad consent with data usage in OSA research and data collection for research purposes. Evaluation of preliminary results of the research project in terms of patient benefit will be carried out by the PPCG in the third meeting. The focus will be kept on the problems with CPAP-therapy and what could be ameliorated as well as issues of data privacy and security. The deliverable will be a website informed by the recommendations of PPCG to raise public awareness on OSA and on the impact of participation in OSA research.

1) Somnolink – Connected sleep data and decision support along the patient path for better care of OSA

… obstacles can arise regarding ethical norms and values that have the potential to impair competent use of these technologies. Thus, my dissertation project focusses on issues of ethical governance regarding patient organizations and their very own digitalization projects such as mobile applications or electronic health records. My research aims at understanding how patient organizations view their digital initiatives in relation to different ethical norms and values and by what means they regulate their digitalization projects so as to assure ethical validity.

To gain such an understanding, I will conduct focus groups with representatives of different patient organizations. The focus groups add a much-needed participatory element to my research. They will be conducted in a semi-structured way so as to leave room for open discussion, networking and generation of new knowledge. Through the discussions I hope to gain insight into the workings of these organizations, their worries regarding digitalization, obstacles they face and the ethical values they see as central. Most importantly I hope to start a dialog with the participants that lasts throughout the research project and intimately informs the research and dissemination products.

Complemented by a literature review and an analysis of patient organization websites, the focus group is the central method of data collection in my research project and its findings will be crucial for the development of tools that support the competent and ethically valid use of digital health technologies by patient organizations and their members, which is one of the main objectives of my research and the PANDORA research network overall.

Since I am new to this field and methodology of research, I stand to gain immensely from participating in the Autumn School. Furthermore, I will bring a fresh perspective to the discussion, informed by my readings thus far and my background in philosophy.

… taking different roles and offering unique perspectives. Any deliberation and participation approach needs facilitation with topic- and process-related information provided to those selected to participate. Besides consideration of how to achieve balanced, factual information that is presented in a way to meet participants’ needs, power imbalances in the provision of information need to be considered (Crompton et al., 2018).

My contribution will be a reflection on how to facilitate participative methods for different types of the public with a special focus on topic- and process-related information provision. Informational needs and potential power imbalances between “professional researchers” and “public participants” will be discussed. I will elaborate on how different types of participants and different information provision can lead to different insights and results. To do so, I will review implementation reports as well as theoretical approaches to participation and deliberation. My area of focus will be the ethics of eMentalHealth as it offers specific challenges for public involvement. Ethical issues regarding digital technology range from patient autonomy, data security and ownership to the conception of sickness and health (see Klugman et al., 2018; Cordeiro, 2021; Friedrich et al., 2021). Future developments in technology are unclear, speculative and high in complexity. Past examples show that expected scenarios did not necessarily translate into actual realization in specific contexts (Lucivero & Jongsma, 2018). Early involvement of the public however will ensure an appropriate implementation of digital technology. Participatory and deliberate approaches in eMentalHealth are necessary, but challenging.

References:
Abelson, J., Blacksher, E. A., Li, K. K., Boesveld, S. E., & Goold, S. D. (2020). Public deliberation in health policy and bioethics: mapping an emerging, interdisciplinary field. Journal of Deliberative Democracy, 9(1).

Biddle, M. S., Gibson, A., & Evans, D. (2021). Attitudes and approaches to patient and public involvement across Europe: a systematic review. Health & social care in the community, 29(1), 18-27.

Cordeiro, J. V. (2021). Digital technologies and data science as health enablers: an outline of appealing promises and compelling ethical, legal, and social challenges. Frontiers in Medicine, 8.

Crompton, A., Waring, J., Roe, B., & O’Connor, R. (2018). Are we all on the same page? A qualitative study of the facilitation challenges associated with the implementation of deliberative priority-setting. Public Management Review, 20(11), 1623-1642.

Dean, R., Hoffmann, F., Geissel, B., Jung, S., & Wipfler, B. (2022). Citizen Deliberation in Germany: Lessons from the ‘Bürgerrat Demokratie’. German Politics, 1-25.

Degeling, C., Carter, S. M., & Rychetnik, L. (2015). Which public and why deliberate?–A scoping review of public deliberation in public health and health policy research. Social science & medicine (1982), 131, 114–121. https://doi.org/10.1016/j.socscimed.2015.03.009

Friedrich, O., Seifert, J., & Schleidgen, S. (2021). KI-gestützte Selbstvermessung der Psyche: Philosophisch-ethische Implikationen. Psychiatrische Praxis, 48(S 01), S42-S47.

Glenn, J. C. (2003). Participatory methods. Futures research methodology, 2, 1-32.

Klugman, C. M., Dunn, L. B., Schwartz, J., & Cohen, I. G. (2018). The ethics of smart pills and self-acting devices: autonomy, truth-telling, and trust at the dawn of digital medicine. The American journal of bioethics, 18(9), 38-47.

Lucivero, F., & Jongsma, K. R. (2018). A mobile revolution for healthcare? Setting the agenda for bioethics. Journal of Medical Ethics, 44(10), 685-689.

… in empirical ethics research to uncover stakeholders informed, considered and collective view on a normative question. We seek to use deliberative consultations to document the understanding, perceptions, and recommendations around social, ethical, and regulatory issues arising from conducting a malaria vaccine efficacy study in the context of malaria HIS y in the Kenyan context.

Methods
We will use participatory workshops with large groups, small group discussions, follow-up interviews, key informant interviews and participant validation as the main data collection methods. Study participants will include HIS stakeholders across the study sites, including community members, former and current HIS participants, community representatives, community opinion leaders (such as heads of women and youth groups and members of village dispensary committees), research ethics committee members, regulatory authority staff, policymakers, local health personnel within the study areas, HIS research staff, and community engagement staff. Data collection will be primarily undertaken at the sites for the main planned malaria HIS in Ngerenya sublocation in Kilifi county and other key stakeholders in Nairobi, Kenya.

Expected findings
We expect that from this work we will build an in-depth understanding of the social and ethical issues arising from conducting malaria human infections studies in the Kenyan context. Additionally, it will increase the understanding of perceptions and recommendations of HIS stakeholders on the social, ethical, and regulatory issues arising from conducting a malaria vaccine efficacy study in the context of malaria HIS.

*Co-authors: Primus Che Chi, Esther Owino Awuor, Melissa Kapulu, Vicki Marsh and Dorcas Kamuya

… involving publics in research about ethical AI in healthcare. Given firsthand experience with healthcare AI is still rare, my methods have involved developing case studies and representations of healthcare AI to prompt discussion about benefits and risks.

In participatory research, the way researchers frame complex problems has a substantial impact on the direction of discussion and the solutions proposed by participants (Barisione 2012). For a number of reasons, framing participatory research about AI is challenging. AI remains a speculative discipline, dominated by discussions about the things the technology might be able to do in the future. Information sources about applications of healthcare AI are heavily dominated by private interests, where proprietors have substantial control over the ways their technologies are written about in research and in the media. These factors present a significant challenge to the design of participatory methods about healthcare AI, which rely on framing issues with as much neutrality as possible.

The final stage of fieldwork for my PhD is a community jury with publics from around Australia. Deliberative methods risk reproducing harmful power imbalances in society when problems are defined in ways that amplify already privileged viewpoints (Blue & Dale, 2016). My presentation will discuss the ongoing process of designing methods to engage publics in balanced discussions about ethical AI in healthcare. Whilst ensuring balanced framing of healthcare AI is crucial for producing deliberative outcomes that are conducive to policy development, uncertainty and the nature of the information landscape makes this challenging.

References:
Barisione, Mauro. “Framing a Deliberation. Deliberative Democracy and the Challenge of Framing Processes.” Journal of Deliberative Democracy 8, no. 1 (April 16, 2012). https://doi.org/10.16997/jdd.124.

Blue, Gwendolyn, and Jacquie Dale. “Framing and Power in Public Deliberation with Climate Change: Critical Reflections on the Role of Deliberative Practitioners.” Journal of Deliberative Democracy 12, no. 1 (June 4, 2016). https://doi.org/10.16997/jdd.242.