Accountability to Affected Populations: Patient Centred Care as a Model
A fundamental right to dignity
From the Inter-Agency Standing Committee’s (IASC) principles for Accountability to Affected Populations (AAP)[1] to the commitments from the World Humanitarian Summit (WHS), there have been countless publications that state that those who live with and through crises should be at the centre of how humanitarian action is designed and delivered. This is based on a core humanitarian principle that people have a fundamental right to dignity, to be treated with respect, and to have a say in the decisions which affect their lives.[2] The Agenda for Humanity expands on this through a commitment to ‘leave no one behind’, that focuses on statelessness, migration, women and girls, and children and youth, and other marginalised and excessively vulnerable peoples, like those with disabilities. These run along with the Grand Bargain’s ‘Participation Revolution’ that seeks to “include the people affected by humanitarian crises and their communities in our decisions to be certain that the humanitarian response is relevant, timely, effective and efficient.”[4]
The Core Humanitarian Standard on Quality and Accountability (CHS) (https://www.chsalliance.org/) has built on these and other research to articulate AAP standards and best practices. This includes nine commitments to communities and people affected by crisis.[5] These build on those from the 2011 IASC principles and provide a framework for principled, accountable, and quality humanitarian action.[6]
Finally, the IASC published a brief on “Collective Accountability to Affected People: Practical Steps for Humanitarian Coordinators and Humanitarian Country Teams” that reaffirms that AAP is a foundation for dignified, quality, and safe humanitarian action and states that:
“AAP is essential for quality programming. Targeted, quality and timely humanitarian action can only be achieved by knowing what people want and need, as well as understanding their practices, capacities and coping strategies. Further, as contexts evolve so do peoples’ views which requires engagement with people and adaptation of programmes and strategies throughout the different stages of operations.”[7]
This is a standard list of the types of best intentions, principles, and frameworks that we are apt to construct as humanitarians. They are also sufficiently muddled to mix the inspiring (right to dignity; quality programming) with absolutely no pragmatic sense of how to achieve any of this.
A window into increased performance
It is misguided—and anyone who has spent considerable time in the field can attest—that simple participation is enough. Very few citizens, in any country, would say that their government was doing enough for them, and when asked, we are all likely to focus on our needs rather than trying to articulate solutions.
Participation has to be meaningful and it needs to lead to better results. Luckily, the medical field provides a model.
Patient-centric care transformed the medical field in the 1980s and 1990s.[8] This put the patient’s experience, beyond the examination room, front and centre, not only because it would make the patient feel more dignified and respected, although that was a happy by-product (and worked against the Foucauldian sense of the power dynamics with doctors), but because the patient had useful information for diagnosis. As stated in a 2011 article on the subject:
The originators of client-centred and patient-centred health care were well aware of the moral implications of their work, which was based on deep respect for patients as unique living beings, and the obligation to care for them on their terms. Thus, patients are known as persons in context of their own social worlds, listened to, informed, respected, and involved in their care—and their wishes are honoured (but not mindlessly enacted) during their health care journey. There have been concerns that patient-centred care, with its focus on individual needs, might be at odds with an evidence-based approach, which tends to focus on populations. Fortunately, that debate has been laid to rest; proponents of evidence-based medicine now accept that a good outcome must be defined in terms of what is meaningful and valuable to the individual patient. Patient-centred care, as does evidence-based medicine, considers both the art of generalizations and the science of particulars.[9]
A patient’s diet, stresses, support networks, exercise, and general perception of their doctors (evidence) all lead to better diagnosis and the likelihood that patients will follow treatment towards an expected prognosis. In essence, the medical field recognises that patients have critical information that enable them to do a better job.
In humanitarian action, we seem to be at a similar junction to that of patient-centred care a decade or so ago—how to consider “both the art of generalizations and the science of particulars.” Principles, policy commitments, and frameworks describe what should be done but it remains unclear how this will actually contribute to improved results. This is compounded by the challenges associated with effectively amassing evidence from affected populations (the patients) and then using this to refine the types of goods and services that are provided to them in ways that can alleviate immediate and chronic vulnerabilities.
Humanitarian action needs to start collecting, analysing, and reacting to evidence from affected populations. In fact, when one considers recent literature on patient centred care, the evidence that has been gained from the approach has proven central to good medicine.[10] A dignified approach and meaningful outcomes are so intertwined in medicine as to be completely inseparable. The same must be true of CAAP if we are to truly reduce the needs, risks, and vulnerabilities that people affected by crises face year in and year out.
Endnotes:
[1] 1. Leadership/Governance: There should be a commitment to accountability to affected populations by ensuring feedback and accountability mechanisms are integrated into country strategies, programme proposals, monitoring and evaluations, recruitment, staff inductions, trainings and performance management, partnership agreements, and highlighted in reporting. 2. Transparency: Accessible and timely information should be provided to affected populations on organizational procedures, structures and processes that affect them to ensure that they can make informed decisions and choices to facilitate a dialogue between an organisation and its affected populations over information provision. 3. Feedback and Complaints: The insights and opinions of a representative cross section of the affected populations should be sought and responded to in order to improve the quality of policies and the successful implementation of programmes. Some important areas to address are the issues raised by affected individuals regarding violations and/or physical abuse that may have human rights and legal, psychological or other implications. 4. Participation: Affected populations should be enabled to play an active role in the decision making processes that affect them through the establishment of clear guidelines and practices to engage them appropriately and ensure that the most marginalised and affected are represented and have influence. 5. Design, Monitoring and Evaluation: Participation of the communities in the design, monitoring and evaluation of the programme should be enhanced as much as is possible in the circumstances with learning and the application of lessons to enhance the programmes delivery incorporated. Sharing lessons with others to enhance the quality of their support should be undertaken. 6. Ownership: Participation of the communities in the design and implementation of programmes that address AAP needs, and the refinement of the activities in response to the community experiences and insights, will results in their owning of the intervention and enhance the likelihood of its success and long term impact.
[2] ‘Do no harm’ and other humanitarian principles are, of course, also relevant to AAP.
[3] See: https://www.agendaforhumanity.org/initiatives/5358.
[4] Grand Bargain Participation Revolution Workstream commitment. https://interagencystandingcommittee.org/system/files/participation_revolution_-_definition_of_participation.pdf
[5] 1. Assistance appropriate and relevant to their needs. 2. Access to the humanitarian assistance they need at the right time. 3. That they are not negatively affected and are more prepared, resilient and less at-risk as a result of humanitarian action. 4. To know their rights and entitlements, have access to information and participate in decisions that affect them. 5. Access to safe and responsive mechanisms to handle complaints. 6. Coordinated, complementary assistance. 7. Delivery of improved assistance as organisations learn from experience and reflection. 8. Assistance from competent and well-managed staff and volunteers. 9. That the organisations assisting them are managing resources effectively, efficiently and ethically.
[6] These standards should not be confused with Sphere Core Standards that provide for minimum humanitarian standards for WASH, food security and nutrition, shelter and settlement, and health.
[7] “Collective Accountability to Affected People: Practical Steps for Humanitarian Coordinators and Humanitarian Country Teams.” IASC; January 2017. (https://interagencystandingcommittee.org/system/files/p2p-support-collective-aap-note.pdf)
[8] For an early study on the subject, see: McWhinney I.R. “Patient-centred and Doctor-centred Models of Clinical Decision-making.” In: Sheldon M., Brooke J., Rector A. (eds) Decision-Making in General Practice. Palgrave, London; 1985. Of course, the notion of patient-centred care goes back even further. See: E. Balint; “The possibilities of patient-centred medicine.” The Journal of the Royal College of General Practitioners. Vol 17 (1969); pp. 269-276.
[9] Ronald M. Epstein and Richard L. Street; “The Values and Value of Patient-Centered Care.” Annals of Family Medicine; March – April 2011, Vol. 9, No. 2, page 100.
[10] Ibid.
