Effectiveness of a Community Health Worker Intervention Among African American and Latino Adults With Type 2 Diabetes

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.

12. July 2019

The myth about decision aids: do they extend the clinical encounter?

Decisions aids are critical to the success of shared decision-making and self-management support. The past ten years have seen a growth in the production of decision aids, yet implementation in practice and use in clinical encounters is lagging. Despite well-established evidence, barriers remain to the introduction of decision aids; one of the most persistent argument is that decision aids extend the clinical encounter.

Decision aids are crucial to patient involvement and shared decision-making, whether applied to clinical interventions or self-management interventions. They potentially have a lasting impact on people´s life by providing unbiased information on alternative therapeutic of lifestyle choices. In COMPAR-EU we are currently reviewing the evidence on self-management interventions for Type 2 Diabetes, Obesity, Heart Failure and COPD. Based on the research, COMPAR-EU will develop decision aids, including patient decision aids, Interactive Summary of Findings tables and Evidence to Decision Frameworks. The overall aim is to build the foundation that these decision aids can be used by patients, clinicians, managers, HTA experts and industrial partners, such as IT developers. The question is, will our tools ever be implemented in practice?

Illustration of a decision aid from the MAGIC Project

Decision aids can improve decision-making processes without affecting consultation time. COMPAR-EU will help better understand system and patient level context factors that influence uptake and impact.

The effect of decision aids on consultation length

A major barrier to implementing decision aids is a clinician´s perception that it will extend his or her limited consultation time. In a recent systematic review, Dobler et al assess the evidence addressing this myth! Out of the 13 studies included in their review, in 9 consultation time was not significantly different in the group that used a decision aid compared to the group without. In three studies, consultation time was somewhat longer, while in one study the consultation time even decreased with the use of a decision aid. More importantly, in a study that evaluated why clinicians didn´t use a decision aid, 38.5% of clinicians said they didn´t use it for fear of extending consultation time.

The results of the review clearly don´t support the myth that decision aids extend the clinical encounter. However, what is true is that the effect of decision aids on consultation length is variable and may depend both on patient (such as health literacy level) and system level factors (such as quality of the decision aid or IT support for the decision aid). The research also shows that there are learning curves, with clinicians overcoming initial concerns after using decision aids and patients becoming more familiar with such tools, too. At the same time, arguably the quality of decision aids has improved in the last decade.

Dr Oliver Groene

Dr Oliver Groene has a track record in conducting research on patient-centred care and promoting health care systems aligned with patients´ and citizens´ needs. In the COMPAR-EU project he acts as Innovation lead to ensure that the research can be successfully integrated into health care practice to the benefit of patients, clinicians and systems.

The myth is busted – decision aids do not extend consultation time!

However, we do need to continue to work closely with patients, clinicians, managers and IT companies to ensure that decision aids are used at the right time and for the right patient. Eventually, informed decisions are crucial to improve today´s health systems, in particular with regard to the challenge of managing chronic diseases and supporting patient´s self-management.

Go-Live of our Self-Management Blog

In June 2019, COMPAR-EU launched a Self-Management Blog that informs about developments in research, policy, and practice. Self-experience reports, interviews, guest articles, and more are published monthly. Beyond that, the COMPAR-EU team recommends monthly interesting scientific articles for reading.

The first blog article was designed by Jacqueline Bowman-Busato, a patient representative, who describes how she finally felt in control of her two chronic diseases. Read the full article “The importance of “self” and “management” in self-management of chronic diseases” on our blog.

You are interested in our recommended articles? Click “scientific article of the month“.

You wish to read more about a specific topic or have an idea for a new blogpost? Write us to contact@self-management.eu

11. July 2019

Update of COMPAR-EU Data Management Plan

The Open Research Data Pilot aims to improve and maximise access to and re-use of research data generated by Horizon 2020 projects and takes into account the need to balance openness and protection of scientific information, commercialisation and Intellectual Property Rights (IPR), privacy concerns, security as well as data management and preservation questions.

Data Management Plans (DMP) are a key element of good data management. COMPAR-EU drafted a first version at the start of the project and describes how the data will be handled during and after the project, the types of research data that will be generated or collected during the project, the standards that will be used, how the research data will be preserved and what parts of the datasets will be shared for verification or reuse. This plan will be updated periodically. The first revision focused on improving the adaptation of the FAIR principles: making data findable, accessible, interoperable and re-usable. To this end we designed a new annex where detailed dataset descriptions can be shared, supported by example excerpts of the data and an electronic file with the database structure can be embedded.