The knowledge and experience held by the patient has long remained an untapped resource within health systems.(2) In the global north, patient-centred health systems were established mainly as a means of improving the quality of care and health outcomes in chronic disease. The developing world and Sub-Saharan Africa (SSA) in particular face acute deficits in human resources for health (HRH) that have generated interest in patient involvement in healthcare for a more urgent reason. This paper seeks to discuss the emergence of the expert patient as an actor in health systems within SSA in light of the HRH crisis, and advocates for an appropriate and sustainable response.

Empty clinics: The African human resource crisis

The African region has 24% of the global burden of disease, only 3% of health workers and commands less than 1% of the world health expenditure.(3) With this declaration in the World Health Report 2006, global attention was finally drawn to the human resource challenge on the continent. The nature of this challenge is complex and in each country, the mix of contributing factors is unique. Generally in the first place, there are absolute and relative shortages that are linked to inadequate training capacity, low training output, emigration of skilled health workers, and maldistribution of workers between urban and rural areas.(4) Mortality from HIV & AIDS among health workers has in addition led to added attrition of an already scarce resource.(5) Further compounding these issues is the poor environment in which the African worker is frequently forced to deliver service; without acknowledgement of his efforts, financial benefits, career development, opportunities or the necessary equipment.(6)

In summary, 36 out of the 57 countries globally that face a HRH crisis are in Africa.(7) Healthcare is a labour-intensive industry. The health workforce is thus an essential building block of health systems.(8) In the same vein, the functioning of health systems is an important determinant of population health.(9) Where there are no health workers, there is relatively more death and disease. Illustratively, 53 out of the 68 countries worldwide with the highest burden of maternal and child deaths have acute health worker shortages.(10) The lag experienced by many nations in SSA with regards to the attainment of the health-related millennium development goals (MDGs) has consequently been associated with deficits in HRH. This has informed the concerted action globally, regionally and in affected countries to the crisis.

The establishment of global and regional networks such as Global Health Workforce Alliance, African Platform on Human Resources for Health, Frontline Health Workers Coalition and the adoption of the Global Code of Practice on the International Recruitment of Health Personnel to Aid Retention are illustrative of the massive advocacy for action directed towards addressing the HRH crisis.(11) Some African countries such as Malawi have since then made remarkable progress through investments in health worker training, recruitment and retention.(12) However, in many other countries, resource constraints limit the capacity of governments to undertake large-scale development of highly skilled labour in the immediate term.(13) Attention has thus turned in several quarters to what is considered a more cost-effective and feasible option: the deployment of low-skilled workers with minimal training in local communities who are thus able to meet basic health needs of their source population.

The local midwife, village health worker or traditional birth attendant have been identified as the usual first point of contact for the ill in poor, rural or remote communities. Much attention in recent times has focused on enabling these frontline health workers to deliver health services through appropriate training, motivation and remuneration.(14) Communities in Africa have seen a lot of task shifting in recent years , particularly from typically urban health centres to community health worker programmes.(15) Evidence suggests that in many cases with inexpensive training these cadres of workers can deliver life-saving and effective primary care.(16) It is within this context that in many communities, a distinct cadre of health worker is emerging, unique in the sense that these service providers are also patients.

The new ‘front-liner’: When the patient becomes the expert

In a white paper in 1999, famously captioned ‘Saving Lives: Our Healthier Nation’, the British Government set out the idea behind an initiative to encourage active patient participation in chronic disease management.(17) This gave birth to the Expert Patient Initiative, the findings of which led to recommendations for nation-wide institutionalisation of self-management for chronic diseases.(18) Along these lines, in the chronic care model developed by Dr E. H. Wagner, self-management was one of six components demonstrated empirically to improve the quality of care in chronic illness.(19) In such illnesses, studies have demonstrated that the patient frequently understands his condition better than the physician and can take part in management.(20) By virtue of knowledge and experience living with his condition, the patient could become an ‘expert’.(21) In fact, with the understanding of disease risk linked to lifestyle choices, patient involvement was framed not only as a means of empowerment but as a duty of citizens towards maintaining public health.(22) Through appropriately structured training programmes, largely tacit knowledge and skills acquired by experience could be explored, refined and made more explicit.(23) The result was a confident client, able to contribute meaningfully to his or her disease management and help others do the same.(24)

The jurisdiction of the patient within healthcare in the global north has since extended beyond self-management. Angela Coulter of the Picker Institute suggested that patient expertise is evident in domains such as the experience of illness, values, preferences, social circumstances and attitudes to risk.(25) With increased acknowledgement of patient capabilities and adoption of patient-centred models of care delivery, patient participation has been encouraged in policy-making, programme development and delivery, service evaluation, advocacy, leadership and support initiatives.(26) The effects of patient involvement in this way have been documented as largely positive: increased accountability among service providers, improved quality of care, increased service access, protection of patient rights, abolition of unbeneficial services and improved self-reported health outcomes.(27) Can the ‘expert’ patient, contributing to health in this way be considered a health worker? The World Health Organisation would answer with an unequivocal ‘yes’ as “health workers are all people primarily engaged in actions with the primary intent of enhancing health.”(28)

The Expert Patient in the African context

With the advent of highly active antiretroviral therapy (ART), patients can now live much longer lives such that HIV & AIDS and Tuberculosis have been established as important chronic communicable diseases in Africa.(29) The effect of the HIV & AIDS pandemic on the HRH crisis and the burden it places on under-resourced health systems has been alluded to above. In addition, the prevalence of chronic non-communicable diseases alone is predicted to surpass the combined prevalence of communicable, nutritional, maternal and child health diseases on the continent by 2030.(30) With increased prevalence of chronic diseases, health systems in Africa are adopting models of care better suited to chronic diseases.(31) There has also been a concurrent increase in involvement of patients in care delivery systems in SSA especially with regards to HIV & AIDS.(32)

With recognition of the patient’s ability to contribute to care, programmes, and policy, expert patient initiatives are being rolled out particularly as components of various ART programmes especially in East and Southern Africa. A recent study by the United States Agency for International Development documented tasks performed by expert patients within the facility and community in ART delivery systems in Uganda.(33) These tasks included patient triaging, laboratory assistance, preventive health education, filing and data maintenance, health education, medicine supply, client tracing and treatment adherence support.(34) A literature search did not yield published accounts of expert patient involvement in initiation of ART and treatment for opportunistic infection.(35)

In several quarters on the African continent, the primary motivation for increasing patient involvement within delivery systems has been a pervasive shortage of skilled staff.(36) For the expert patient, work is often self-initiated, unremunerated, driven by the desire to help improve services for fellow clients and a means of linking care to the community.(37) The engagement of expert patients within health systems in Africa specifically in policy, programmes and health promotion has thus been advocated primarily as an avenue for dealing with HRH constraints.(38) With adequate training, expert patient programmes could serve as a much cheaper and feasible way of meeting the need for health workers in hard-to-reach and low resource areas. In addition, the combination of often tacit and experiential knowledge of the patient with explicit and refined skills of the provider could lead to complementary positive effects in care quality where these cadres work alongside each other. Recently therefore, there have been calls and initiatives directed at the institutionalisation of patient involvement in delivery systems, possible remuneration of expert patients and standardisation of their training.(39)

Involvement of expert patients in aspects of care beyond their self-management raises fresh issues in general and for the African context in particular. Firstly, the concept of the empowered and participatory patient is at odds with the usual paternalistic stance taken by healthcare providers.(40) Expert patient involvement in care delivery therefore will require a change in the perception of the patient. Once the passive beneficiary, the patient should ideally become an active partner in the care process,(41) and possibly the delivery system. Evidence from the global north indicates that patient involvement is therefore frequently resented by medical professionals who consider their turf threatened and often question the capability of expert patients.(42) Remarkably, however, empirical studies in Africa demonstrate that even though there are concerns among health professionals about the limits of responsibilities of patients, their engagement in healthcare delivery and policy is appreciated and even encouraged.(43) This stance could be attributed to the huge shortfalls in manpower. The expert patient in these situations is filling an acute need.

A second issue of concern, closely related to the first, is the danger of extending responsibilities of the expert patient beyond his or her capabilities. The expert patient programme in the United Kingdom designed for self-management had a well-structured training curriculum.(44) This involved mentoring, the deliberate inculcation of knowledge and defined skills shaped by experiences of trained peer educators.(45) It was patterned after an evidence-based chronic disease self-management course designed by Dr Kate Lorig of Stanford University.(46) Within the African context, the patient’s responsibilities have been extended much further, and in quite a number of situations the training is much less thorough.(47) This raises ethical issues. Can we honestly and objectively say that involving the expert patient in this manner is not doing more harm than good for the recipients of the service, for the expert client and for the community? If care delivered by expert client is of less value, is it not inequitable to offer these services to clients with the greatest need? Could patient involvement not encourage the formal health worker to compensate by reducing service supply so that the expert clients contribution is not additive but could even lead to an overall reduction in productivity? Is it appropriate not to financially reward the services of the expert patient if they are indeed of equal or comparable value? These are questions that must be resolved by empirical studies and should be considered in making policy.

Thirdly but as important, is the propensity for expert patient programmes to become institutionalised and the possible impact that this may have on African health systems. Ivan Illich, an outspoken critic of expert systems and institutionalisation, argued that the process seemed to stifle creativity, with gatekeeping inclinations barring entry into created institutions and restricting access to the knowledge or skill-set required to become an expert.(48) This process, he asserted made institutions eventually counterproductive and defeated the purpose for which they were formed.(49) He argued for ‘convivial’ alternatives to organised learning and action, where social networks such as those established in informal expert patient programmes facilitate learning and are platforms for productivity.(50) As much as Illich’s ideologies have been criticised as extreme,(51) there is a need to consider these factors in deliberations concerning institutionalisation of expert patient programmes in Africa. Notably, in the United Kingdom, evidence is emerging of protectionist tendencies among expert patient peer educators with monopoly over the right to work in this capacity.(52) Also pertinent to the African context are the potential resource implications of such institutionalisation. One of the obvious benefits to the health system of expert patient participation as experienced so far is the relative absence of contracted financial remuneration as compared to formal health workers.(53) Often times these patients receive certain benefits in cash or kind from the community and informally from facility management. There is however no obligation to maintain a financial commitment to these clients as their work is voluntary. A potential economic implication of institutionalisation of expert patient programmes in Africa is the establishment of a monopoly with price fixing, inefficiency and an increased demand on already scarce financial resources.(54)

A fourth and final concern regards the issue of sustainability. The response to the African HRH crisis so far can be described as predominantly emergency or humanitarian. In many rural and remote areas, the frontline health worker is the community health worker, traditional birth attendant or occasionally, the expert patient. These health workers were deployed to provide essential services as a stopgap solution to the HRH crisis. There is however the possibility of a disincentive for governments to invest in more sustainable solutions. In the long-term, Africa does need adequate numbers of highly-skilled formal health workers trained in world class institutions and distributed equitably. This calls for a more comprehensive response, one that addresses the immediate health needs of communities, but does not preclude investments towards the development and maintenance of a highly skilled health workforce.

Patient-centred but quality-assured health systems

The patient-centred model incorporating self-management has been empirically demonstrated to improve quality of care and clinical outcomes in chronic disease.(55) In the light of the current staff shortages in SSA, there is a demonstrated additional compelling reason to seriously consider the widespread adoption of models that increase patient involvement in care. However, the roll out of expert patient programmes is not an excuse for complacency of governments even if it is a more feasible course of action in the immediate term. There is a need to ensure standards of quality of care.

Thus, there should be adoption of structured training programmes patterned after the chronic disease self-management programme,(56) but adapted to suit contextual requirements. These programmes should have defined targeted sets of skills and knowledge, preferably co-delivered by peer expert patients facilitating a more informal culture of learning and building on social capital. Reorientation for formal health workers may be effective,(57) in order to facilitate a relationship between provider and patient that is balanced, where the patient is regarded as an equal contributor. Within the health work force as a whole, there should be a clear designation of roles and duties, matched with the knowledge and skills of each cadre. Such a system would require enforced regulation to avoid overstepping of acceptable boundaries by expert patients or compensatory underperformance by health workers.

There is still a huge gap in the research regarding our understanding of the role of the patient in healthcare delivery and the possible implications of this. Thus investing in operational research, adequate monitoring and programme evaluation would facilitate this understanding and inform future policy. With regards to institutionalisation and possible remuneration, the arguable strength of expert patient programmes, as currently run, is their link to the community, often facilitated by existing social networks. There is a risk of distorting this effect with forced organisation, creating the counterproductive situation that Illich warned about.(58) In many communities, the village health worker is a respected caregiver, whose services are appreciated in cash and kind out of the benevolence of the recipients. The expert patient is not only a caregiver; he or she has experience in the illness that puts him or her in a unique position to identify with clients. The expert patient is the new village health worker.

Conclusion

In the short term, there are therefore compelling reasons to encourage the training and deployment of expert patients, especially in areas that are hard-to-staff, preferably supervised by formal healthcare workers. In regions where health worker shortage is not a burning issue, health systems that involve patients in decision-making and care delivery have been demonstrated to be more effective in terms of patient outcomes and client satisfaction. In the longer term, however, there is the additional need to build a highly skilled workforce, create suitable working conditions that facilitate its retention, and a reward system that motivates high performance.

There is no one-size-fits-all solution to the HRH crisis in Africa. It is therefore important than in every country there is a comprehensive and evidence-based strategy for developing human resource for health. This should occur within the framework of overall health system strengthening. Expert patients, however, will provide many resource-constrained environments with a viable option as they strive to meet the immediate health needs of their populations. In the words of Dr Mubashar Sheikh: “We cannot talk about the health MDGs without talking about health workers. The health MDGs is what we want to achieve; the health workforce is the how.”(59) In many communities all over Africa, that health worker on the front lines in the immediate term could be the expert patient.

Written by Adanna Chukwuma ⁽¹⁾

NOTES:

(1) Contact Adanna Chukwuma through Consultancy Africa Intelligence’s Public Health Unit ( public.health@consultancyafrica.com).
(2) ‘The Expert Patient: a new approach to chronic disease management for the 21st Century’, Department of Health, National Health Service, UK, 14 September 2001, http://www.dh.gov.uk.
(3) ‘Working together for health’, The World Health Organisation Report, 2006, http://www.who.int.
(4) Dambisya, Y.M., Lipinge, S. and Loewenson, R. ‘Health worker retention and migration in Africa - implications for sustaining health systems’, University of Limpopo, University of Namibia, Training and Research Support Centre in EQUINET, with ECSA-HC, Mimeo, Paper produced for the African Platform for Human Resources for Health, August 2010, http://www.aphrh.org.
(5) Tawfik, L. and Kinoti, S. ‘The impact of HIV/AIDS on health systems and the health workforce in sub-Saharan Africa’, SARA Project, USAID Bureau for Africa, Washington (DC), 2003, http://www.hrhresourcecenter.org.
(6) Ibid.
(7) ‘List of 57 countries facing human resources for health crisis’, Global Health Workforce Alliance, 2006, http://www.who.in.
(8) ‘Monitoring the building blocks of health systems: a handbook of indicators and their measurement strategies’, World Health Organisation, 2010, http://www.who.int.
(9) ‘Closing the gap in a generation: Health equity through action on the social determinants of health’, Commission on Social Determinants of Health - final report, 2008, http://whqlibdoc.who.int.
(10) ‘Every woman, every child: Access for all to skilled, motivated, and supported health workers’, Background Paper for the Global Strategy for Women’s and Children’s Health, Partnership for Maternal, Newborn and Child Health, September 8 2010, http://www.who.int.
(11) ‘Adding Value to Health’, The Global Health Workforce Alliance 2010 Annual Report, http://www.who.int.
(12) ‘Country case study: Malawi’s emergency human resources programme’, Global Health Workforce Alliance, 2008, http://www.who.int.
(13) Hanson, K., et al., 2003. Constraints to scaling up health interventions: A conceptual framework. Journal of International Development, 15, pp. 1-14.
(14) ‘Frontline health workers: the best way to save lives, accelerate progress on global health, and help advance U.S. interests’, Frontline Health Workers Coalition issue brief, http://gapps.org/docs.
(15) ‘Global Experience of Community Health Workers for Delivery of Health Related Millennium Development Goals: A Systematic Review, Country Case Studies, and Recommendations for Integration into National Health Systems’, Global Health Workforce Alliance, World Health Organization, 2010, http://www.who.int.
(16) ‘Frontline Health Workers: Best investment for a healthier world’, Frontline Health Workers Coalition, 2012, http://www.healthynewbornnetwork.org.
(17) ‘Saving lives: our healthier nation’, Presented to Parliament by the Secretary of State for Health by Command of Her Majesty, July 1999, http://www.archive.official-documents.co.uk.
(18) Ibid.
(19) Wagner, E. H., 2001. Meeting the needs of chronically ill people. British Medical Journal, 323, pp. 945-946.
(20) Lorig, K., 1993. Self-management of chronic illness: a model for the future. Generations, 17, pp. 11-14
(21) Shaw, J. and Baker, M. “Expert patient”—dream or nightmare? BMJ, 328(7442), pp. 723-724
(22) Kielmann, K. and Cataldo, F., 2010. Tracking the rise of the “expert patient” in evolving paradigms of HIV care. AIDS Care, 22(S1), pp. 21-28.
(23) Eraut, M., 1994. Developing professional knowledge and competence. Falmer Press:London.
(24) Ibid.
(25) Coulter, A., 1999. Paternalism or partnership? British Medical Journal, 319(7212), pp. 719–720.
(26) Nilsen, E. S., et al., 2010. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material (Review). Cochrane Database of Systematic Reviews, 2006(3).
(27) Crawford, M. J., et al., 2002. Systematic review of involving patients in the planning and development of healthcare. British Medical Journal, 325(7375), pp. 1263-1265.
(28) Ibid.
(29) Bekker, L., Egger, M., and Wood, R., 2007. Early antiretroviral therapy mortality in resource-limited settings: what can we do about it? Current Opinion in HIV & AIDS, 2 (4), pp. 346-351.
(30) ‘The global burden of disease: 2004 update’, World Health Organisation, 2008, http://www.who.int.
(31) ‘Innovative care for chronic conditions: building blocks for action’, Global report, World Health Organisation, 2002, http://www.improvingchroniccare.org.
(32) Ibid.
(33) Crigler, L., et al., 2011. ‘Task shifting in HIV/AIDS service delivery: an exploratory study of expert patients in Uganda’. A Research and evaluation report published by the USAID Healthcare Improvement Project. Bethesda, MD: University Research Co., LLC (URC).
(34) Ibid.
(35) Decroo, T., et al., 2012. Are expert patients an untapped resource for ART provision in Sub-Saharan Africa? AIDS Research and Treatment, 2012, http://www.hindawi.com.
(36) Ibid.
(37) Ibid.
(38) Ibid.
(39) Ibid.
(40) Ibid.
(41) Ibid.
(42) Elwyn, G., et al., 1999. Towards a feasible model for shared decision making: focus group study with general practice registrars. British Medical Journal, 319(7212), pp. 753-756.
(43) Ibid.
(44) Ibid.
(45) Ibid.
(46) Lorig, K., 1996. Chronic disease self-management: a model for tertiary prevention. American Behavioural Scientist, 39(6), pp. 676-683.
(47) Ibid.
(48) Smith, M. K. 'Ivan Illich: deschooling, conviviality and the possibilities for informal education and lifelong learning', The Encyclopaedia of Informal Education, http://www.infed.org.
(49) Ibid.
(50) Ibid.
(51) Ibid.
(52) Kennedy A., Rogers A. and Gately C., 2005. From patients to providers: prospects for self-care skills trainers in the National Health Service. Health and Social Care in the Community, 13, pp. 431-40.
(53) Ibid.
(54) Ibid.
(55) Coleman, K., et al., 2009. Evidence on the chronic care model in the new millennium. Health Affairs, 28(1), pp. 75-85.
(56) Ibid.
(57) Légaré, F., et al., 2010. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database of Systematic Reviews. 2010(5), http://xa.yimg.com.
(58) Ibid.
(59) Ibid.