Organizational- and system-level characteristics that influence implementation of shared decision-making and strategies to address them – a scoping review

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.

Self-management on the go! The role of apps in self-management of chronic conditions

Self-management of a chronic disease is a worthy goal but can be hard to reach. The development of self-management apps promises to ease self-management but despite the continuous development and some promising results there is still mixed evidence on the effectiveness of self-management apps.

The development of self-management apps has come with the promise of delivering self-management interventions with lower costs, easily accessible and potentially adaptable to the user (Whitehead & Seaton, 2016). And indeed, mobile technologies have been increasingly introduced into daily practice, particularly for patient communication, monitoring, and education, and to facilitate adherence to chronic disease management (Hamine, et al., 2015). Patients also seem to be interested in the trend. A recent systematic review (Hamine et al., 2015) that focused on interventions in supporting the adherence (“mAdherence”) found that the usability, feasibility and acceptability or patient preferences was generally high in the 107 studies analysed.

Self-management apps are promising, but we have to better understand when and how they can be more effective and useful to patients.

Variability in results

Despite the raising interest and use, the evidence is still mixed. The above mentioned systematic review found that only 39% of the RCTs that measured effects on clinical outcomes for chronic diseases reported significant improvements of mAdherence interventions. This variability in results goes in line with findings of other systematic reviews. Rathbone & Prescott, 2017 found that despite overall improvements in physical health and significant reductions if anxiety, stress, and depression, the effect was considerably reduced over a short period of time (immediately post-test to 6 month follow-up).


Dr Rosa Suñol

Dr Rosa Suñol leads the first EU tender on patient empowerment and has been involved in several EU projects on the areas of patient empowerment and self-management since then. She now leads the COMPAR-EU project with the aim of contributing significantly to reducing the gap between evidence on self-management and its implementation across Europe.

New clues?

Given this lack of clarity on the effectiveness, new research is emerging focusing in particular on identifying the reasons for this variability. For example, a recent RCT (Ma, 2018) on the use of mobile health applications in chronic diseases found a variability in the use of apps (measured by the number of apps and the updating of those apps). Ma found that several factors influence the use, highlighting that Emergency hospitalization and significant change in personal health condition increase the likelihood of updating apps. On the other hand, factors such as being parent or older age were associated with lower use, when controlling for other socioeconomic effects.

Therefore, it seems that if we want to take advantage of the potential benefits and advantages of apps for self-management, we need to tailor those apps to the circumstances of the people using them. And there is still much to learn on the specific circumstances in which the self-management apps work best and how to sustain it overtime. COMPAR-EU aims to contribute in this area by performing sub-group analysis on the effectiveness of app-based self-management interventions to help identify precisely those areas of success, contributing to expand them across Europe.