the situation

The webinar on patient involvement held in September 2019 by the Young EAP (European Academy of Paediatrics) aimed to bring together different perspectives on how healthcare professionals and their patients can work together on the content and design of future policy decisions in child healthcare. The following post is the result of debating patient involvement amongst young doctors, including input from three key speakers, representing patients’, parents’ and professionals’ perspectives. We invite all readers of this post to bring these insights into their local teams and use the questions to inspire debates. At the moment, different countries across Europe have different approaches to specialty postgraduate training: paediatric trainees’ pathways vary in:

Three perspectives on patient involvement

The patients’ perspective

To deliver a diagnosis of a chronic condition comes along with many substantial changes for the patients’ and family members’ lives. The future as one imagined and wished is lost within one moment, and questions like “Why me?” arise. Fear, vulnerability and uncertainty come along with the diagnosis of a chronic condition. There are services that can help patients deal with such feelings, but currently there is no formal structure for the delivery of these. A patient advisor (mediator) can look at problems from both the general patients’ perspective and the healthcare perspective to facilitate patient empowerment. To have expertise in healthcare or related areas is helpful for this role. A patient advocate is someone who is actively involved in raising awareness on a specific condition and the importance of patient engagement. Patients themselves can become patient representatives who support the interests of a patient group with a certain chronic condition within a patient organization and patient experts who represent their own condition in which he or she already experienced self-management.  

“The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” Alma Ata Declaration, Principle IV (1978, WHO).

There are several good opportunities for the collaboration between patients and healthcare professionals in the areas of research, treatment strategies, policy recommendations, education and personal experiences with conditions and treatments. Paediatricians are challenged by the lack of representativeness of their patients’ needs, including conflicts of interests and the underestimation of youth experiences.

 The parents’ perspective 

• Having a good balance between the actual contact with the patient and the time spent behind the computer: A quick and spontaneous walk into the room and an informal “Hello, how was your night?” can already bring doctors and patients/families closer. It shows your involvement and keeps you up to date also with the little things that matter. This is especially important to patients and their families facing tough times when they feel unsettled by doctors spending more time on making sure everything is documented correctly. 

• Make sure to build trust and a good relationship: This depends on the type and length of the treatment, but is of very high importance to patients and families who are confronted with tedious and complex treatments. Good, open communication is a key factor and helps show your interest in the condition of the patient. A doctor can be both professional and personable. Personal reflection and empathy are needed to succeed with an honest consultation, sharing with our patient all the information on the condition and everything that  accompanies it. The child should be involved from an early stage on with age-appropriate explanations. This will make the child feel respected. Children have a good intuition; they know a chronic condition makes them different from others. Trying to concentrate on activities that they still will be able to do with their chronic condition is part of the toolbox. In order to reach the child, we need enough time for conversation, so consultations should be well planned. Patients and families wish for a good and trustworthy relationship with  their doctor, for which time is crucial. 

• Identify if extra help is needed: Accepting your child is suffering through demanding treatments with uncertain outcomes has an impact on family life. Focus on support for siblings and parents is necessary. It is not pivotal who is evaluating the family situation, but somebody has to be responsible and make sure the family is provided with the needed support.

• Allow close cooperation between clinicians and scientists: We all want good health for our children. Especially in rare diseases new treatments still have to be discovered and new insights have to be translated into potential treatment options. Innovative, intensive and thorough research is essential for improving health, and it underlines the importance of the collaboration between clinicians and scientists. Additionally, explaining statistics can be a helpful mean for parents to understand and evaluate treatment options. 

• Talk to the child: It is crucial to see the family as a whole and ask parents for their impression, but never forget that the patient, the child, needs individual and extra attention and that you have to communicate directly and not only via the parents. Children like to communicate, regardless of their age. A sense of control is essential for a child facing so much uncertainty with a chronic condition. Little things matter, like letting the child decide whether to give the injection now or in 10 minutes or whether to count down or apply it directly. It might take longer in the beginning, but gain time in the long run. The age and level of maturity of the child sets a direction in our communication with them. Healthcare workers need to reflect on their ability to take this into account. When explaining something to a child cooperating with the parents is key as they know how their child likes and is able to communicate. 

The senior professionals’ perspective 

• The importance of patient involvement: The first involvement of youth related to health dates back to the 5th century BC whereas the more recent United Nations Convention on the Rights of the Child from 1989 constitutes an important legal landmark and asks for more ownership of young children in health issues. For effective collaboration and improvement of healthcare it is essential to remember that health is the result of different aspects that should be addressed. 

• The broader view on health: Apart from Research and Treatment, that have been mentioned earlier, there are two more dimensions for future collaboration and involvement, namely Health services and Disease Prevention. Health services because healthcare providers can only be as good as the system in which they work and provide patient care. And Disease Prevention because it includes wider determinants of health such as environmental factors and the access to health information and services. These are out of the control of individuals and professional organizations; they rest with governments. 

• Areas for improvement:
  • Training and education: The way in which determinants of health are explained and discussed with patients can and must be improved. 
  • Recognition: That the system and the context in which we work are very important for the care we can provide. 
  • Politics: Governments need to act more on our behalf -we as professionals must advocate for what we and our patients need.

• The contribution of young doctors:
  • Advocacy: Be your patients’ voice, start lobbying and advocate in their interest. Interact with your own professional organization, speak and argue with the areas for improvement in mind. Examples: the removal of child poverty, equitable access to child healthcare, effective opportunities for research, lowering the voting age. 
  • Leadership: Dare to take on leadership and encourage others to do the same. 

• Future learning for young doctors:
  • Early life and wider determinants: pre-conceptual and intrauterine conditions matter and are the start of trajectories, which are then influenced by our own personal decisions and the circumstances (e.g. cleanliness of water and air, immunizations) in which we grow up. 
  • Healthcare systems: you cannot deliver good healthcare if the system is not supportive. Learn how these systems work and share your knowledge with colleagues and patients.
  • Open-mindedness and the will to interfere: Societies change and so do the peoples’ aspirations towards existing structures.

Powerful questions for future discussions on local and global levels

1. How can/should doctors and other healthcare workers increase patient involvement in the implications of the type of wider healthcare system and not only in individual care, and secure these as long-term improvements?
2. How do doctors reconcile between a paternalistic, merely informative/marketized and truly collaborative healthcare system?
3. How can you reach a patient in emotional chaos? 
4. How can you give the child a sense of control and what works in communication?

Summary

 On the professional and personal level, we as healthcare providers should practice being honest, humble and present. By using our time to involve patients and families routinely we will most certainly gain time and trust in the long run. This will be disease prevention as well as good clinical care. 

On the systematic level our education system needs to become more flexible and adapt to changing societies and standards. The youth and leaders of tomorrow need to advocate for chance, and operating principles of healthcare systems should be included in medical training. Patients, families and professionals share similar ideas about the future of healthcare but that the resources for living up to these standards are often deficient. 

Webinars, such as the one providing the input for this blog post, is a modern, efficient and effective way to exchange perspectives on health-related issues. Patient involvement is a very broad topic and with this webinar we only touched the surface of it.

About the authors

Jana Popova – A patient with a neuromuscular disorder and representative of the European Patients Forum. As an Executive Committee member of the European Alliance of Neuromuscular Disorders Associations she helps to encourage the cooperation between different European patients’ organizations for neuromuscular disorders. In 2018 she joined the youth section of the EPF that empowers her to act as a patient advocate. 

Vanessa de Jong – Mother of three children. Her 7-year-old daughter had a neuroblastoma and went under treatment in the Netherlands. It was a difficult road for her and her family and this process is still going on with hospital check-ups every two months. Vanessa has been working as an external auditor for PwC and now moved to the social responsibility group in the same company.

Professor Neena Modi – Professor of Neonatal Medicine at Imperial College London with a wide profile as a medical leader, clinical scientist, advocate for child health and wellbeing, and campaigner for the retention of the NHS as a publicly funded and delivered healthcare system.

Lena de Maizière is the German representative within Young EAP and a fourth-year pediatric resident. 

Karen Daehlin Holm is the Norwegian representative within Young EAP. She is a third-year pediatric resident, currently doing a year of child psychiatry.