By: Kenneth Youngstein, CEO, Biocom Ltd; Founder, Foundation for Health & Mind Development; and Orbis Volunteer Faculty on Patient Counselling
According to WHO, in some countries, only one in three people have the risks of their treatment explained to them, one in five people have at least one unnecessary test and up to 40% of health spending is wasted due to inefficiency. Healthcare should not be like this. Putting people at the centre of health services is the core aspect of primary health care. Thus, the need for innovative, balanced, holistic and people-centred approaches to health care is imperative.
It is important for hospitals and healthcare professionals to realize that the needs of patients go beyond just their medical requirements. While medical needs remain the priority, auxiliary matters such as comfort, psychological, social, cultural, and spiritual needs should likewise be addressed. Patients are not trained in medical school, but they are experts in their condition because they live with it 24 hours a day, seven days a week. When a health professional first meets a patient, he/she only sees the tip of the iceberg. Patients and their families know what’s underneath.
Relevance of Patient Counselling in Eye care and the challenges
Patient counselling can play a critical role in addressing people’s needs and expectations, helping patients decode the disease, and understanding the impact of illness in the life of patients and their families. The counsellors can then offer treatment plan in partnership with the patient, by effectively managing their perceptions and choices.
Effective patient counselling not just leads to happier and more educated patients, but also makes more profit sense to the hospitals. It has been observed that poor counselling and lack of correct information on eye conditions, can render patients to drop out of the proposed treatment, resulting in poor vision to visual impairment or even vision loss. As many as 80% of patients who are diagnosed with a serious eye problem drop out of care somewhere along the route to treatment. They don’t show up at the clinic for further tests; or they don’t show up for surgery; or they don’t come back to the clinic for follow up.
Despite the obvious need on adopting effective patient counselling, driving efforts towards developing and strengthening counselling departments in India is still a far reached goal. A vast majority of eye hospitals in India are yet to build spaces which can facilitate confidential conversation, build trained counselling teams, or even ensure optimal counselling team size to cater to the heavy OPDs. Lack of training courses in patient counselling in eye care, makes it further challenging for counsellors to up-skill themselves.
Role of Orbis and the Way Forward
Over the last 30 years, Orbis has been transforming lives by preventing and treating avoidable blindness. Orbis, in collaboration with its local partners across the globe, provides the skills, resources, and knowledge needed to deliver accessible quality eye care.
In 2020-2021, Orbis focused on an essential, but often overlooked aspect of healthcare – patient communication. Good communication helps patients identify potential eye problems and motivates them to seek care. It also allows doctors to diagnose problems more accurately, and together with the patient, to decide on the most appropriate treatment. Working in collaboration with health communication expert Ken Youngstein and the Swiss-based Foundation for Health & Mind Development (FHMD), Orbis organized a series of 12 virtual workshops and trainings to train patient counsellors and optometrists from 30 partner hospitals in India. These workshops focused on the essential skills of good communication, which include establishing a relationship of trust and respect, and understanding the patient’s experience of disease, their concerns, and their expectations, as well as their beliefs, which often stand in the way of treatment. The trainings also engaged 18 counselling and clinical experts in Cataract, Glaucoma, Pediatrics, Oculoplasty, and Retina, to help counsellors simplify the medical jargons while they discuss the eye conditions with patients, and help them learn and practice the key skillsets required for effective patient counselling. The counsellors were also trained on using an illustrated information/ education tool, “The Eye Book”, which can be used by the counsellors in their discussions about eye diseases and treatments with patients and families. The Eye Book is being shared with the 30 hospitals across India in eight Indian languages.
Orbis also worked with FHMD to develop a much-needed resource, ‘Singing Tree’, an illustrated children’s book to educate school children on relevance of wearing spectacles to correct refractive error, removing taboos around use of spectacles and to increase compliance rate of wearing spectacles. Authored by Kenneth Youngstein, the Singing Tree tells the story of Anita, a young girl who believes the tree behind her home sings to her, because she cannot see the birds. Her mother identifies the problem, Anita is fitted with spectacles, and her world is transformed. The Singing Tree has been widely used in Orbis’s REACH Program which screens school children and provides spectacles to those who require them and refers children with conditions such as cataracts, glaucoma, squint, or eye cancer to nearby secondary/ tertiary partner hospitals. The book has been published in six Indian languages and distributed to schools and clinics across India.
Over the next three years, Orbis plans to amplify its initiative on strengthening patient communication by establishing two Regional Resource Centers (RRCs) in Western and Eastern part of the country. By the end of this initiative, the RRCs will be equipped with improved patient counselling infrastructure, strengthened systems and processes to drive effective communication and will be delivering training courses to not just counsellors, but also ophthalmologists and para medical staff in their regions. A National Special Interest Group on Patient Communication will also be constituted to drive numerous initiatives and facilitate forums to strengthen patient communication in India.