The expert patient is a resource that primary health care must utilise

Monday, 12 November 2018

IAPO as a global patients' organisation must appreciate the globalism of health care initiatives and their links with the global economic, social, political and technological developments. The Declaration on Primary Health Care Astana adopted on 25 October 2018 in Astana Kazakhstan must be understood in this context. In this article IAPO CEO, Kawaldip Sehmi, explores the impact of this declaration in the context of global healthcare.

In 1974 the leaders of the 17 non-aligned nations had lobbied the United Nations Conference on Trade and Development and had put into place the policy instrument: the Declaration for the Establishment of a New International Economic Order. This was the harbinger of the reform to come that would change General Agreement on Tariffs and Trade (GATT) later. These nations had been pushing to secure better terms of trade for their commodities.
In 1978 there was a new spirit of internationalism as the journey towards globalism had just started. There was a thaw in the cold-war as President Jimmy Carter had come into the White House and had developed a rapport with the Soviet leader Leonid Brezhnev. The global power had begun to shift as the Organization of the Petroleum Exporting Countries (OPEC) had just proved that they could almost bring northern Europe and the World to a stop by managing oil prices. 
In 1977 WHO and its 194 member states had eradicated smallpox principally through vaccination led by primary health care teams. There was a new optimism about global cooperation and improving health outcomes for all.

The first Declaration of Alma-Ata 1978, adopted by all WHO Member States in Alma-Ata (now Almaty) in the Soviet Kazakh Republic (now Republic of Kazakhstan), was an important declaration made during this optimistic times. It was made at the first global gathering of health experts and world leaders and the first to emphasise the role of primary health care and commit to ‘health for all’. 
In light of this internationalism, the WHO, UNICEF, international organizations, multilateral and bilateral agencies, non-governmental organizations, funding agencies,  health workers and ministries of health joined up  to promote, protect and support national and international commitment to primary health care. Alma-Ata Declaration set the commitment to increase technical and financial support to low and middle income countries. 

The conference called on ALL to collaborate and support primary health care in accordance with the spirit and content of the declaration. It set  out10 points to follow and started by defining health in line with the WHO constitution: Health is "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity" and then moved to include social and economic sectors within the scope of attaining health and reaffirms health as a human right.


Astana 2018

The Declaration of Astana on Primary Health Care adopted forty years later on 25th October 2018 in Astana Kazakhstan brings a new world order. The Soviet Union is gone, Alma-Ata has changed its name to Almaty and despite USA President’s, Donald Trump's earlier proclamation at the UNGA 2018 that patriotism overruled globalism, Astana 2018 has managed to bring new global stakeholders into this declaration. 

For the first time, we now have civil society, patient groups, international development agencies, other supra NGOs like Gates Foundation and GAVI joining health experts and world leaders in championing for primary healthcare. This conference, attended by over 2000 participants from 150 countries around the globe showed the rise of civil society participation and engagement in health care policy and service delivery. The presence of patient organisations and the willingness of the organisers to give them a platform on all discussion panels indicated that the world of primary health care had moved on since 1978.


Why a primary health care focus?

WHO defines primary health care (PHC) as health care received in the community, usually from family doctors, community nurses, and staff (rural community health workers-ASHA in India) or other health professionals in local clinics. 
PHC provides "essential health care" that is based on "scientifically sound and socially acceptable methods and technology, which make universal health care accessible to all individuals and families in a community. 
It is through the full participation of individuals and families, and at a cost that the community and the country can afford, that we can maintain every stage of the development of their health and wellbeing in the spirit of self-reliance and self-determination. 
PHC is an approach to health beyond the traditional health care system that focuses on health equity-producing social policy. PHC includes all areas that play a role in health, such as access to health services, environment and lifestyle. in this sense, PHC and public health measures, taken together, may be considered as the cornerstones of universal health systems.

What does Astana Declaration aim to do?

The Heads of State, ministers and other representatives want to strengthen primary health care (PHC) as it is the most inclusive, effective and efficient approach to enhance people’s physical and mental health, as well as social well-being. To WHO, PHC is a cornerstone of a sustainable health system for universal health coverage (UHC) and health-related Sustainable Development Goals. 
The Astana gathering is also supporting a United Nations General Assembly high-level meeting on UHC in 2019. The Astana PHC Declaration will contribute enormously towards this. Governments want to pursue their paths towards achieving UHC so that all people have equitable access to the quality and effective health care they need, ensuring that the use of these services does not expose them to financial hardship.
At Astana they reaffirmed their commitments expressed in the Declaration of Alma-Ata of 1978 and the 2030 Agenda for Sustainable Development, in pursuit of Health for All, and said that The Astana Declaration aims to see:
  • Governments and societies that prioritize, promote and protect people’s health and well-being, at both population and individual levels, through strong health systems; 
  • Primary health care and health services that are high quality, safe, comprehensive, integrated, accessible, available and affordable for everyone and everywhere, provided with compassion, respect and dignity by health professionals who are well-trained, skilled, motivated and committed; 
  • Enabling and health-conducive environments in which individuals and communities are empowered and engaged in maintaining and enhancing their health and well-being; 
  • Partners and stakeholders aligned in providing effective support to national health policies, strategies and plans


IAPO's Position: Why is primary health care important for patients? 

A good primary health care system is one which is within reach of all patients (less than 30 minutes physical journey) and helps in:
  • Primary prevention (stops us from becoming patients in the first place!).
  • Secondary prevention. Most importantly PHC must have robust secondary prevention programmes that prevent our diseases progressing out of control, requiring acute care and hospitalisation. The monthly monitoring of diabetic patients to prevent retinopathy, nerve damage and kidney dialysis clinics are examples of secondary prevention.
  • Providing patients with psychosocial support. Someone to talk to and share your experiences, especially if patients and community groups are allowed to be set-up and use the clinic days to meet up.
  • Participation of expert patients. Expert patients to participate in and contribute towards their local preventative, curative, rehabilitative and other primary care programmes.
  • Patient engagement in PHC.
  • Patient groups, especially expert patients, are an important health asset and investment for PHC. States must invest in developing our capacity to participate and engage with PHC decision-making. It is urgent that our participation be reviewed if we want a patient centric PHC (Leveraging up specific community health assets to improved integration to develop national community health platforms and strong community health systems).
  • We need to break the professional and systems silos that currently exist in PHC and ensure that patients are integrated within every structure of the PHC system and decision making (PHC: breaking the silos to make it happen).
  • From early screening and diagnosis, right through to secondary prevention programmes, there should be an integrated and well publicised care-path way. The expert patients can illuminate this pathway for new patients. Expert patients act as path finders (we are an asset to PHC) Integrating Primary Health Care Service Delivery.
  • When Educating and scaling up Primary Health Care workforce to achieve UHC , remember patient advocates (expert patients) are your greatest asset. You must educate and develop them too. They are value for money. Local and loyal.
  • The threat of over diagnosis, especially in anti-biotic prescription, is a shared responsibility between the patients and their health professionals in PHC. As UK Chief Medical Officer said: pushy patients and push over health professionals are a risk to the antimicrobial resistance control.


The way forward

Following Astana, IAPO would like to promote and offer a new modified approach to primary health care that places the Expert Patient at the heart of all decision-making in primary health care. The Expert Patient is a resource that primary health care must utilise.


Expert Patients

The Chief Medical Officer of England’s defines expert patients as patients who have navigated their local health care pathways and have developed heightened levels of health literacy, confidence, skills, information and knowledge and can play a central role in not only the management of life with chronic diseases, but also provide insight into their health system and care pathway design and service delivery.
The expert patient can become a:
  • Valuable resource in health promotion and prevention programmes, 
  • Link to the local community and patient community, 
  • Advocate at local administrative and political gatherings, and 
  • ‘Media savvy’ spokesperson for the PHC. 
In a conducive enabling environment, the expert patient can be trained to become a health professional in their own right and given jobs within the local primary health care system. In some countries, blood transfusion dependent expert patients (like beta-thalassemia major) have been trained up to become phlebotomists and assist the weekly clinics.

Proposed Modified WHO Building Blocks of Primary Health Care (PHC) post Astana. Red shows where patients can help.