ISQua´s 36th International Conference

The 36th International Conference of ISQua, the International Society for Quality in Health Care, took place from 20-23 October 2019 in Cape Town, South Africa. This year’s theme was “Innovate, Implement, Improve: Beating the Drum for Safety, Quality and Equity.”

Our partner FAD had two oral presentations!

Advancing patient-centred care: development and external validation of comprehensive taxonomy of self-management interventions in chronic conditions

Are we researching in the areas that matter for patients? Developing core outcome sets for self-management interventions in chronic disease

Great effort by the whole consortium to disseminate the work carried out!

25. October 2019

COMPAR-EU project and the importance of patient involvement

At EPF, we believe that meaningful patient involvement is a “must have” approach in research projects. Meaningful patient involvement implies that patients take an active role in activities that impact them and the patient community in general. Their hands-on knowledge and personal experience are very valuable for the process that needs to be considered. For effective and meaningful patient involvement it is crucial to establish partnerships on equal terms among patient organisations, health professionals, carers’ association, industry, insurers, health managers, and authorities.

Patients´ experiential knowledge is valued: they are seen as genuine partners rather than “validators” and “approvers” of research results. Meaningful patient involvement is planned well in advance, “built-in” to the design, resourced, and its impact is beneficial to all project participants. Patients should not be used as a last resort: they should be involved from the very beginning and kept informed during the follow-up stages. Here is how we are striving to achieve this in COMPAR-EU in a nutshell.

Patient involvement is of key importance when designing the final product of the project – the COMPAR-EU Interactive Platform!

How is meaningful patient involvement incorporated into the project?

This year, EPF initiated the process of identifying, summarizing and ‘translating’ key outputs produced within the project in order to adjust them and make them accessible and understandable for the patient community. This process is formally known as ‘adaptation’. To do this, EPF decided to set up a group of patients (a ‘patient panel’) that will be involved during the full duration of the project and take an active part in all stages of this adaptation process. The patient panel meets once a month (online teleconferences) and is a substantial asset to EPF’s work in the project. The way we selected the participants in the patient panel was mainly through our membership and our Youth Group. We also reached out to attendees in the Core Outcome Sets Consensus Building Workshop that took place in Berlin last year. As always, to capture all possible perspectives, we try to balance when it comes to country, background, chronic condition and scientific knowledge/expertise. During these webinars, valuable knowledge and ideas are exchanged among members that bring additional level of depth and tangibility to what is conducted in the project. Members of the patient panel not only question the methods used when developing the projects’ products, but also are actively involved in what follows next and, in the design, and implementation phases of COMPAR-EU.

Lyudmil Ninov

As EPF´s Project Officer and EPF´s Youth Group Coordinator, Lyudmil Ninov is responsible for different EU research projects.

In COMPAR-EU, Lyudmil and his team at EPF ensure that patients´ views, gender and socio-economic dimensions are considered throughout the whole project.

What is planned in the future?

In 2020, EPF has planned very exciting activities, including (but not limited to): two face-to-face meetings of the patient panel, the production of lay summaries focused on what has been conducted by the project so far and re-occurring online webinars. During these webinars, creative ideas flow in the air and members of the panel can truly shape the way the final project product will look like. We plan to expand the patient panel as we would like to diversify the group of patients and patient representatives involved. If you are interested in joining – please get back to us – there are still available places!

After we have designed our first draft of the COMPAR-EU Platform, there will be dedicated sessions on the functionality and usability together with actual testing face-to-face meetings. All these activities will bring even more patient centeredness to COMPAR-EU and showcase the direct benefits of patient involvement.

Social network influences and the adoption of obesity-related behaviours in adults: a critical interpretative synthesis 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.

2nd Consortium Meeting in Ioannina, Greece

There is always good collaboration and exchange between all COMPAR-EU partners at different stages. In addition to work package-specific meetings in which involved partners participate, all consortium partners meet once a year. This year, our second consortium meeting took place on 30th of September and 1st of October 2019 in Ioannina, Greece. UOI hosted this event. The two full working days with discussions on the status of the project development were very fruitful. The extraction process for the first disease (Diabetes Mellitus Type 2) has been largely completed and network meta-analyses of the effectiveness of self-management interventions can begin. We are also starting to develop our final product, the COMPAR-EU platform featuring decision aids. Consortium meetings are very crucial as they foster interactive group discussion and drive our work forward.

9. October 2019