Telehealth for global emergencies: Implications for coronavirus disease 2019 (COVID-19)

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.

Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

30. April 2020

CLOSED – Call for proposals for the COMPAR-EU platform development

In the last months, all COMPAR-EU partners were working closely together to advance our work on the specification and functionality of our final product: the COMPAR-EU platform. (more…)

23. April 2020

The importance of self-management support in times of COVID-19

The COVID-19 pandemic has forced many countries to impose mandatory confinement measures and mobility restrictions. Although a necessary decision to contain the spread of COVID-19, it has proven hard for citizens, and it is not without risks in other areas of health.

We are taking advantage of this month’s issue to reflect on the need to support the population, especially those suffering from chronic diseases, to actively implement self-management practices.

Self-management support is even more important today to attend patients´ needs, prevent exacerbations, avoidable hospitalizations, and progression of the severity of chronic conditions.

Supporting healthy lifestyles and self-management of diseases as a priority

In the context of the COVID-19 pandemic, we need to advocate and support healthcare professionals to continue promoting mental health care and healthy lifestyles. Governments that have not yet done so, are encouraged to promote physical exercise, daily walks, and access to family-friendly community spaces, while maintaining social distancing measures. The promotion of healthy eating is to be emphasized, considering the reduction in energy expenditure and physical activity that has occurred due to confinement. At the same time, warning the population not to overdo physical activity is also essential. As for the management of chronic diseases, we must urgently ensure that patient contact is not lost. This can be achieved by promoting the use of remote consultations and seeking additional strategies to accompany patients in their care, such as family involvement.

Epidemiological data has shown that older patients with chronic conditions are at high risk of severe and critical illness from COVID-19, resulting in high mortality (Yang, Jing, 2020). Therefore, it is even more important to highlight the need for effective communication with patients while providing adequate self-management support, including advice on self-monitoring and early detection of worsening symptoms, as well as establishing point of contact for any health need. These measures could contribute to reducing exacerbations, avoidable hospitalizations, and associated healthcare costs. This will be also important during post-confinement periods to avoid symptoms of post-traumatic stress and the progression of the severity of chronic diseases (WHO, 2020).

Dr Carola Orrego Villagrán

Carola, Deputy Director of the Avedis Donabedian University Institute (FAD), has extensive experience in the design, management, and coordination of research and development projects in the field of quality improvement and patient safety. She has participated in several European and Spanish research projects focused on patient empowerment and self-management.

Implementing self-management support in the context of COVID-19

The COMPAR-EU project, currently in the analysis stage, is examining the comparative effectiveness and cost-effectiveness of self-management interventions and we do not yet know which self-management strategies are most effective and cost-effective to provide good guidance to stakeholders. However, we know that there is substantial evidence from hundreds of systematic reviews supporting the effectiveness of different types of remote interventions for several types of outcomes. Many of these describe positive results in short-term interventions that can be of value in the context of COVID-19 (PROSTEP, 2015).

Regarding the scope of implementation, most of these interventions can be carried out by a range of healthcare professionals, specially from primary care, including doctors, nurses, physiotherapists, dietitians, psychologists, and others. The wide scope of healthcare professionals who can implement these interventions can improve the distribution of the burden of care in the current context of scarce resources. Intervention outcomes, within the context of COVID-19, should prioritize patient activation and self-efficacy, psychological wellbeing, maintaining healthy lifestyles, self-monitoring and early detection of worsening symptoms, ensuring adherence to treatments, and reducing avoidable hospitalizations. When implementing non-face-to-face interventions, it is essential to ensure a variety of security measures including informed consent, confidentiality, and accurate patient identification (Ghosh, Gupta & Misra, 2020). Published recommendations regarding the use of telehealth in the context of a global emergency should also be taken into account (e.g. Smith et al., 2020). Finally, we need to consider that the type of support provided is aligned with the patients’ needs and tailored to their health literacy level, considering several means of remote delivery and avoiding digital inequities, particularly with older people.

Self-management support is even more important today, and we need to ensure continuity of care for our patients. Do not hesitate to contact the COMPAR-EU team for any assistance or further information related to self-management support.

20. April 2020