Healthcare has always been seen as delivered by doctors in a brick and mortar setting where the patient reaches the structure in times of sickness. Critical care has been the mainstay of medical teaching and learning, and the expectation is that those who are sick must seek healthcare from an expert. With the advent of long-term chronic diseases and more recently the Corona pandemic, delivery of healthcare has taken several other routes and home healthcare, community healthcare etc has become an accepted norm. With digital and technology adding value to access, healthcare is no longer seen in the traditional model of the patient traveling a long distance to see the doctor in his/her clinic or hospital. The changing models of receiving and delivering healthcare has also changed the relation between those who provide care and the recipients. The participation of sick people and the people who take care of them represents a significant change in the care model. The paternalistic and authoritarian model, centred on the illness and the authority of the professional, generated by the asymmetry of technical knowledge between patient and expert/professional, is evolving towards a more deliberative model, centred on the rights and duties of the patient. Informing, consulting, involving, collaborating, and empowering are increasingly complex and comprehensive levels of participation and there are no standard criteria for approaching this participation. The importance of models of patient involvement in the health system can be understood by talking about the patient experience in its entirety. The patient experience covers the full range of interactions that patients have with the healthcare system and includes the care received from health programs and health professionals, from doctors’ offices, care centres, as well as patients’ interactions with the fields of health research and education.
Advances in treatment modalities and personalised healthcare has also necessitated a deeper involvement of patients and caregivers. Person-centred care or people-centred care needs to shift to Collaborative Health (CH) to minimise the asymmetry between the professionals and the people under care and to meaningfully involve patients and caregivers in their healthcare journeys. The basic elements for building collaborative health would be A) Sharing information B) Accepting flexibility in the way decisions are made. C) Establish and build trust. D) Understanding the key touch points and journeys. Acute and chronic conditions are influenced by the geographical conditions, health literacy, access, affordability, beliefs, cultural contexts, and healthcare infrastructure and journeys can significantly vary. Patient- and family-centred care expresses a vision of what healthcare should be in terms of a partnership between professionals, patients and families to ensure that decisions respect patients’ needs, wishes and preferences based on patients access to education, information and support they need to make decisions and participate in their own recovery. Involving patients in their healthcare decisions therefore is a complex and arduous experience and difficult in circumstances where healthcare providers are overburdened and short of time. However, journey mapping and key touchpoints can be advantageous in keeping patients engaged and involved and understand if the clinical outcomes are as expected by the patients and caregivers and help modify plans if outcomes are not as expected. This helps in adherence, timely revisits and refilling and minimising lost to follow up.
A patient journey is the sequence of steps beginning with a patient’s awareness that they are not well and reaching out to hospitals, healthcare professionals, or other stakeholders in healthcare. Insights into patient experience and the outcomes of their disease will be unravelled by understanding these journeys. In the context of patients suffering from non-communicable diseases, these interactions can be broadly categorised as (1) awareness of lifecycle and natural history of disease and knowledge of associated risk factors; (2) screening and risk assessment at an early stage; (3) early diagnosis and appropriate treatment decision; (4) treatment experience and access to care; and (5) adherence to treatment for longterm management. The examination of these patient journey touchpoints helpsto identify opportunities in noncommunicable disease management and helps in prioritizing interventions for improving prevention and control. Strategies to improve the patient journey must integrate the patients’1 perspective at each touchpoint.
A key question to be answered is: who represents the patients? Is it the person who is suffering from a disease, their caregivers, patient bodies and organisations or a combination of all? For a healthcare provider to decide this in a matter of few minutes of consultation is very difficult. It is, therefore, important to engage the patients and their families in the healthcare system as a whole and not just in the consultation. For acute care and for immediate requirements the patients and families could offer a solution, for prevention, long term care and improving the experience of the therapy area, it might be more useful to engage patient bodies and associations that can bring the collective view of a number of patients. Participation at each touch point is dependent on several variables — the willingness to participate in a free and non-coercive way in an environment of trust and, at the same time, of a need to support those who have to make complex decisions2 3. Angela Coulter emphasizes collaboration between patients and healthcare providers to “promote and support the active participation of the patient and the population in the healthcare system and enhance their influence on healthcare decisions, both individually and collectively”. James Conway developed the model of public participation at the Institute for Healthcare Improvement based on patient involvement during the care experience, within the microsystem of the clinic, care unit or healthcare institution. The Center for Advancing Health sets the framework for patient participation and involvement by focusing on behaviour, defining participation as “actions that people take for their health and to benefit from the healthcare they receive” and provides a list of participatory actions4. Another definition of patient involvement in health is: “patients, families, health representatives and health professionals working actively together at different levels of the health system to improve health and healthcare 5.
Patient participation can have many dimensions depending on the maturity of participation. It usually starts with self in search of answers to unanswered questions and progresses to various levels of expertise. The various levels of engagement could be A) Participation in their own health B) Participation in the improvement of services and the organisation of institutions C) Participation in the field of knowledge, research and teaching D) Participation in the field of health policy design. Co-production and Co-design of health systems and healthcare decisions ensure participation at all levels using the expertise of patients at a level they are comfortable with. A key element to this participation is the healthcare provider’s ability to communicate the right information and help the participant to feel comfortable and confident to participate. From the stage when the patient is informed of his diagnosis and understands it to the treatment decision process shared between the patient or his relatives and the professional health team, the provider should be able to communicate in simple non-threatening language, the essence of the treatment options and pathways and help the patient and family make a choice that is appropriate for them. Shared decision making would entail the professional determining how to leave sufficient space to understand and respect the patient’s values and preferences. More and more professionals believe that the paternalistic model of clinical practice is completely inappropriate and a deliberative model, where the physician and patients discuss what values are most appropriate for the patient in each specific circumstance can lead to better outcomes and enhanced patient satisfaction. Involving people and patients in the redesign of the services they receive enables adjustment of the services to real needs and is in turn a useful strategy to promote their implementation. People’s participation requires adequate tools and spaces to be effective and is a process that requires careful thought and sufficient investment in terms of time and resources. The European Patients Academy for Therapeutic Innovation (EUPATI) describes a pathway for involvement of patients and families in drug development research and clinical trials. In many parts of the world accessibility and perceived usefulness of existing research to the patient is very limited. Patient and public input can help to ensure that researchers clearly explain what their study is about, that they communicate more sensitively with the public, but also that studies are carried out to make research more effective, and that the communication of the results to citizens is improved helping better pooling of participants and increasing diversity of participation. Patient can contribute by offering their experiences, materials and design of protocols. The highest level of participation though is patient and patient groups led research where patients and researchers systematically collaborate in all phases of the study, from defining the scope to disseminating the results, under the active participation of patients and caregivers or their representative organisation.
Another key area of participation is the design and delivery of medical and allied medical fields education — nursing, dentistry, pharmacy etc. The participation in this field is still evolving with a few universities developing models that believe that the patient experience can contribute to the professional’s scientific knowledge. Hearing patient stories and their lived experience reveals a different dimension to the textbook perception of the progression of disease that often misses the complex relationship between the individual’s psychological and societal dimensions of the lived experience and the clinical manifestation of the disease. The World Health organisation (WHO) has organised a series of consultations over the last two years with people with lived experience in non-Communicable diseases to inform policy and health system strengthening. The consultation report, scheduled to be released early 2023 emphasises the need to treat patients contributing to research and policy as experts and be valued at par with any other expert. Titled “The WHO Framework for meaningful engagement of people living with noncommunicable diseases (NCDs) and mental health conditions” it lays down the norms/standards for engaging people with lived experience in the co-creation, implementation, monitoring, evaluation and governance process of related policies, programmes and services. It also emphasises the need to build capacities of patients and patient groups to meaningfully contribute to their healthcare journeys and decisionmaking process.
Co creation and Co-design of healthcare systems and delivery with the patients and caregivers’ active participation can help to achieve better clinical outcomes. Patient participation is one of the essential conditions to guarantee the Patient experience, but it is not sufficient on its own to change the organisational culture of an institution. Health care providers and health workers need a paradigm shift in the way they have been taught to deliver healthcare, so that patient engagement becomes a reality and shared decision making and options for choice result in a more pleasant experience for care providers as well as patients.
2 Gramberger M (editor). Citizens as Partners OECD Handbook on information, consultation and públic participation in policy-making. OECD, 2001. https://www.internationalbudget.org/wp-content/uploads/Citizens-as-Partners-OECD-Handbook.pdf