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Community & Science

  • 1. How can we assess whether health interventions and services are acceptable and people-centred?
    2. What affects acceptability of health interventions and services?
    3. How can we optimise research design and community/public engagement to support ethical health research?
  • 1. Acceptability of health interventions (such as vaccines or critical care procedures) to target users and implementers is important for effectiveness. Acceptability is a complex concept and we lack guidance on how to assess it. Similarly, people-centred approaches are recognised as a core part of quality health care, but there is an international knowledge gap around appropriate assessment methods. Assessment is particularly challenging in low-income contexts of historical disempowerment and limited choice. Developing frameworks for assessment of acceptability within intervention trials and examining the strengths and weaknesses of different assessment methods can support future consideration of acceptability and people-centred care, including as part of process evaluations.

    2. Understanding what affects acceptability of health interventions, such as vaccines or critical care procedures, and broader services, such as palliative care, can support relevant intervention design and service improvement. We are interested in what affects acceptability of specific interventions/services (such as a malaria vaccine or palliative care), and in identifying common factors or processes affecting acceptability across interventions.

    3. MLW strives to ensure participation in all studies meets high ethical standards, including voluntary informed consent, fair benefit and acceptable study procedures.

    Two interlinked strands of work support this agenda:
    • Research design and participation: examining experiences of research participation and seeking stakeholder perspectives on challenging issues for study design can provide feedback to inform ethical research design in MLW and other organisations.
    • Public and community engagement can support ethical participation through building understanding of research that supports informed engagement and eliciting feedback that supports acceptable and relevant design. Engagement can also support broader ethical goals of capacity building and social value. Engagement is complex and further evidence on effective approaches can improve practice.

    Across these objectives, we consider acceptability and ethics alongside each other and understand both concepts as part of a broader people-centred approach to health care and research that incorporates criteria such as participation, equity and accountability. This approach assists in conceptualising acceptability as more than uptake: we are interested in informed, active demand for interventions and informed, enthusiastic research participation, not passive agreement. The diagram below shows this thinking.
  • 1.       How can we assess whether health interventions and services are acceptable and people-centred?

    ·         Assess the strengths and weaknesses of different empirical methods and theoretical approaches (e.g. qualitative longitudinal research, realist evaluation, visual participatory methods) for understanding acceptability and people centred care.

    ·         Develop a conceptual framework that can guide assessment of acceptability, indicating definitions and aspects to consider.

    ·         Develop guidance on assessing acceptability of health interventions in low-income country contexts.

    ·         Support MoH plans for assessing people-centred care in Malawi

     

    2.       What affects acceptability of health interventions and services?

    ·         Identify the contexts and process affecting acceptability of specific interventions and services (see project list below).

    ·         Longer term synthesis project: develop a theoretical framework indicating contexts and processes that affect acceptability of health interventions.  

     

    Objectives 1 & 2 are taken forward through the following projects:

    ·         Acceptability of maternal vaccination in Vietnam and Malawi (IMPRINT grant, 2018-19) – examining the value of different methods and factors affecting acceptability in different contexts

    ·         Africa Research Collaboration on Sepsis (NIHR, 2018 – 2020), with Lung health group – acceptable and people-centred approaches to sepsis management

    ·         Evidence Informed Decision Making Network (Evident, 2018-2021), with Malaria Epidemiology, MoH, CoM and other partners in Malawi – developing capacity for health systems research, including collaboration with MoH on priority research around quality and people-centred healthcare.
  • Grants

    • Acceptability of maternal vaccination in Vietnam and Malawi. IMPRINT
    • Examining appropriate compensation and benefits for participation in research. (Wezzie Nyapigoti) GHBN
    • Examining perspectives on age of assent among guardians and children of different social and cultural contexts within Malawi. (Helen Mangochi) GHBN/Wellcome Trust.
    • Evidence-Informed Decision Making Network for Health Policy & Practice in Malawi (EvIDeNt) (cross-group)
    • Perspectives of research stakeholders on sharing of unanonymised participant information between research studies. (Mackwellings Phiri) GHBN/Wellcome Trust. Dynamics of Health Care Utilization Strategies in the Context of RTS,S/AS01 Vaccine Introduction (cross-group). PATH. 

    Papers published 2017 and 2018

    1. Nyirenda, D, Gooding, K, Sambakunsi, R et al. Strengthening ethical community engagement in contemporary Malawi. Wellcome Open Research. Sep 2018
    2. Nyirenda, D, Gooding, K et al. Complexities and dilemmas in community consultation on the design of a research project logo in Malawi. PLOS One
    3. Phiri M, Gooding K, Nyirenda D, Sambakunsi R, Kumwenda M, Desmond N. “Not just dogs, but rabid dogs”: Trust and distrust amongst research volunteers and communities in Malawi. Global Bioethics.
    4. Gooding K, Phiri M, Peterson I, Parker M, Desmond N. Six dimensions of research trial acceptability: How much, what, when, in what circumstances, to whom and why? Social Science & Medicine. 2018 Jul 25
    5. Greenhalgh J, Gooding K, Gibbons E, Dalkin S, Wright J, Valderas JM, Black N. How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis. Journal of Patient-Reported Outcomes. 2018 Jul 6 
    6. Gooding K, Newell JN, Emmel N. Capacity to conduct health research among NGOs in Malawi: Diverse strengths, needs and opportunities for development. PLoS One. 2018 Jul 5;13(7).
    7. Gooding K, Makwinja R, Nyirenda D, Vincent R, Sambakunsi R. Using theories of change to design monitoring and evaluation of community engagement in research: experiences from a research institute in Malawi. Wellcome Open Research. 2018 Feb 8;3:8.
    8. Nyirenda D, Sariola S, Gooding K, Phiri M, Sambakunsi R, Moyo E, Bandawe C, Squire B, Desmond N. “We are the eyes and ears of researchers and community”: understanding the role of community advisory groups in representing researchers and communities in Malawi. Dev World Bioeth. 2017 Sep 5
    9. Gooding K. The role of NGOs’ service delivery experience in developing relevant research agendas: experience and challenges among NGOs in Malawi. Health Research Policy and Systems. 2017 May 4;15(1):38.
    10. Greenhalgh J, Dalkin S, Gooding K, Gibbons E, Wright J, Meads D, Black N, Valderas JM, Pawson R. Functionality and feedback: a realist synthesis of the collation, interpretation and utilisation of patient-reported outcome measures data to improve patient care. Southampton (UK): NIHR Journals Library; 2017 (Health Services and Delivery Research).