Author: Nina Adrion

Managing my Type 2 Diabetes: personal patient story of a successful journey

It´s time to change!

The COVID-19 pandemic scared me into action. Social media was invaded by posters and articles highlighting the increase in obesity during lockdown as people increasingly turned to food for comfort. I wondered what complications I was likely to get if my weight kept increasing. During the first two months of the pandemic and lockdown, I taught myself to make no-knead bread after following a YouTube video. Thus, I found myself endlessly making brown bread rolls, just in case we ran out. And I ate and ate.

I am becoming hugely interested in learning more about patient-driven self-management tools and processes.

My husband, on the other hand, started a diet and was soon shedding weight. He encouraged me to change my relationship to food. I thought about this and asked myself: “What do I most love to eat?” The instant answer was “Indian Food”. Because of the pandemic, we could no longer have our occasional meal in an Indian restaurant. So, I decided that, as I had learnt to bake bread daily, I could also learn to cook the Indian dishes that I most yearned for. And that’s what I started to do, from September 2020 to the present. YouTube is the school that helped me to become a chef.

As I am a vegetarian, I bought a steamer to cook 5 different types of fresh vegetables daily, adding spices according to Indian recipes that I have learnt to make – my food is extremely well balanced now. If I hanker after something sweet, I’ve found a recipe using chia seeds, raw cacao, and skimmed milk. After a few hours in the fridge, the mixture turns into a mousse – only a few calories and sugar-free. And the hankering is satisfied!

I now avoid the temptation of eating processed carbs and stick to low calory fresh veg which I steam and mix with herbs, spices and lentils to die for. I have learned to toast and grind my own spices. With advice from a dietitian, I was overjoyed to be encouraged to continue reducing my insulin intake. I used to take a total of 82 units of a mixed dose of Insulatard and Actrapid daily. I am now down to a combined dose of 8 and 6 in the morning and sometimes have none in the evening if I am on intermittent fasting. I check my blood sugar 4 times a day, and avoid bread, pasta and rice. The HbA1c blood test was recently down to 6. A huge difference! Hope I manage to continue on this promising pathway.

Through the European Patients’ Forum and COMPAR-EU, I am becoming hugely interested in learning more about patient-driven self-management tools and processes, exchanging good practices and knowledge with the other members of the Panel. The activities that the Panel is part of are vital to the success of COMPAR-EU project and empowerment patients. Finally, I am also interested in how patients who are managing their condition well can become mentors of other patients who are affected similarly. There are some plans for building a Toolkit for Mentors with useful tips and recommendations within the project.

Nora_compar

Nora Macelli

Nora Macelli is CEO of the St Jeanne Antide Foundation (SJAF) in Malta, a registered social purpose NGO that provides a range of support services
for very vulnerable families at both community and national levels. Nora studied social work in India (MSW), specialized in community development and was a full-time volunteer community development worker there for six years and a volunteer with the United Nations Volunteers (UNV) for two years. With a colleague, she has edited two books in Maltese for family caregivers of mentally ill persons. She is especially interested in volunteer mentoring with persons with complex needs and peer mentoring by persons with the lived experience of domestic violence and family caregiving in the field of mental health.

30. September 2021

Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD): The development of a Core Outcome Set for COMPAR-EU project

17. March 2021

Call for Panel members

Do you want to be part of a panel that will formulate clinical recommendations about the most promising self-management interventions for patients with obesity?

Your participation will help ensuring that effective and safe self-management interventions are equally accessible for patients with obesity.

We are looking for healthcare professionals and patients/caregivers that will formulate recommendations about the use of self-management interventions for patients with obesity. For more information please click here.

If you are interested in participating in this panel, please register here by 19 March 2021.

1. March 2021

Evaluation of Patient Willingness to Adopt Remote Digital Monitoring for Diabetes Management

23. February 2021

A new year for patient empowerment and self-management: 2021 plans and opportunities!

EPF leads the work of COMPAR-EU on eliciting patients’ priorities and preferences. In this role, EPF works to identify patient-prioritised outcomes as reported in the literature for each of the four focus chronic conditions; through the same lens, EPF ensures that patient’s views, gender, and socio-economic dimensions are accounted for and guarantees meaningful patient empowerment across various project outputs and tasks.

To inform this work, EPF regularly engages a dedicated Patient Panel that advise with first-hand experience and expertise. Furthermore, EPF representatives are part of the COMPAR-EU IT Platform Task Force and EPF members are updated monthly on the project’s progress. Finally, in order to make the results of the project more accessible to non-expert audiences, EPF produces lay language summaries of key project documents.

Activities and Achievements of the Patient Panel in 2020

Before looking ahead, let us summarize what was done last year. In 2020, members of the COMPAR-EU Patient Panel (PP), together with EPF representatives, joined forces and focused their efforts on three key areas related to patient involvement and engagement:

  • Webinars and Workshops – regular webinars and two workshops where patient input onto project activity was taken on board;
  • COMPAR-EU Platform Task Force – members of the PP became part of the Task Force dedicated to the development, design, and implementation of the final project output;
  • Work on various project outputs and their translation into lay language continued.
We are confident that the Research Centre ‘Self-Management Europe’ will contribute to further strengthen patient empowerment.

EPF decides to join “Self-Management Europe” Research Centre

Over the years, EPF has done a tremendous amount of work in the field of self-management in chronic conditions. One of the best examples of this is the PRO-STEP project, an EPF-lead project that explored the added-value of self-management in chronic diseases in a context of promotion of self-care in European health systems, hence the decision of the EPF board to join this new initiative and continue the promotion and reinforcement of patient empowerment and self-management in Europe.

lyudmil

Lyudmil Ninov

Lyudmil is a Senior Programme Officer at EPF. He is in charge of project development, overall project management and policy research. Lyudmil holds a Bachelor degree in European Studies from the Sofia University in Bulgaria and a Master degree in European Studies from the University of Maastricht, the Netherlands. At EPF he has several key topics of expertise such as: self-management, patient involvement & digital health.

estefania-cordero32

Estefania Cordero

Estefania is EPF’s Project Communications Officer. Her work focuses on communicating project developments and results, participating in project communications work packages, and managing content coordination across platforms for all EPF projects. Prior to joining EPF, she worked at the European Commission’s DG Research and Innovation, and as a Health Policy Researcher.

The year ahead – what is coming up next for EPF in 2021?

Looking to the year ahead, EPF is planning a range of activities focused on communicating with patients. Mainly, EPF will continue to hold its quarterly webinars with the patient panel in order to validate project materials and consult on planned activities. In previous years, EPF produced 5 lay summaries of key project outputs. This year, the focus will be not only on translating those documents into the working languages of the project, but also producing infographics and short videos to support the dissemination of these materials. Lastly, as part of its work to ensure accessibility and sustainability, EPF will continue to contribute to the COMPAR-EU IT Platform testing, validation and review, which it has been participating in from the start of the proces.

22. February 2021

Call for papers for a special issue

Dear  researcher or expert in the field of self-management,

The International Journal of Environmental Research and Public Health (IJERPH; ISSN 1660-4601, IF 2.849; Q1 (38/162) in Public, Environmental and Occupational Health (SSCI)) is currently running a Special Issue entitled “Implementation of Self-Management Interventions in Chronic Disease Care: Challenges and Lessons Learned”, with Dr. Monique Heijmans and Dr. Carola Orrego serving as Guest Editors. If you are working in the field of self-management and chronic diseases and have recent scientific output, we believe that you could make an excellent contribution. Thus, we are delighted to invite you to contribute to this Special Issue devoted to gathering evidence on experiences in chronic diseases; self-management; complex interventions; contextual factors; implementation research; etc.

For further details, please follow the link to the Special Issue website.

The submission deadline is 31 October 2021. You may send your manuscript any time now until the deadline as individual papers will be published on an ongoing basis. Submitted papers should not be published or under consideration for publication elsewhere. We also encourage authors to send a short abstract or a tentative title to the Editorial Office in advance (ijerph@mdpi.com).

IJERPH is fully open-access. Open access (unlimited and free access by readers) increases publicity and promotes more frequent citations, as indicated by several studies. Open access is supported by the authors and their institutes. An article processing charge (APC) of 2300 CHF (Swiss Francs) applies to papers accepted after peer review.

For further details on the submission process, please refer to the instructions for authors at the journal website.

We look forward to hearing from you.

Dr. Monique Heijmans,
Dr. Carola Orrego
Guest Editors

5. February 2021

Helping decision makers making informed judgments: COMPAR-EU decision-making tools

COMPAR-EU is starting its fourth year, and now, after completing the network meta-analysis to estimate the relative merit of self-management interventions, we are also working to facilitate the use of this new knowledge the project is gradually delivering. One of the key steps of COMPAR-EU is the development of different outputs to facilitate decision-making for different stakeholders and scenarios. The goal is to produce interactive tools for health care professionals, patients, and policy makers, among others.

The tools that are being developed are Summary of Findings (SoF) tables, Evidence to Decision (EtD) frameworks, and decision aids. These tools were originally developed by the GRADE working group in the context of a European project called DECIDE. They are part of the GRADE approach, which is a systematic approach to assess and communicate the certainty of evidence (“quality of evidence” or “confidence in an estimate of effect”) and the strength of recommendations. COMPAR-EU uses GRADE to evaluate the certainty of evidence about the effects and will also use it to formulate recommendations.

Summary of Findings tables (SoF)

These tables present the main findings of a review in a transparent, structured, and simple tabular format. In particular, they provide key information concerning the certainty or quality of evidence (i.e., the confidence or certainty in the range of an effect estimate or an association), the magnitude of the effects of the interventions examined, and the sum of available data on the main outcomes.

The SoF tables will be interactive to improve understanding and use of evidence of the effects of healthcare interventions. They allow users to interact with the presentation by viewing more or fewer outcomes, more or less information about each outcome, information about the absolute effects as numbers, words or graphs, cursor over explanations and links to more detailed explanations of basic concepts (e.g., “95% CI”).

Bridging the gap between clinical research and everyday healthcare practice requires more effective communication strategies. With several interactive GRADE based decision making tools COMPAR-EU aims to contribute to narrowing this gap.

Evidence to Decision (EtD) frameworks

EtD frameworks help panels use evidence in a structured and transparent way to inform decisions in the context of clinical recommendations, coverage decisions, and health system or public health recommendations and decisions. EtD frameworks have a common structure that includes the formulation of the question, an assessment of the evidence, and drawing conclusions, though there are some differences between frameworks for each type of decision. EtD frameworks inform users about the judgments that were made and the evidence supporting those judgments by making the basis for decisions transparent to target audiences.

Illustration: Sarah Rosenbaum, Norwegian Institute of Public Health

The frameworks take into account the magnitude of desirable and undesirable effects, stakeholder views on the importance of different outcomes, information on resource use and cost-effectiveness, impact on equity, and other aspects like acceptability or feasibility of the interventions. COMPAR-EU partners are producing the different pieces of evidence that will populate the frameworks; comparative effectiveness analysis via network metanalysis, cost-effectiveness evidence, and contextual factors evidence, helping formulation of recommendations and future implementation of successful self-management interventions.

Using the frameworks, COMPAR-EU panels are being assembled and will formulate clinical recommendations using a population perspective. These recommendations could be then applied (adopted) or adapted to different settings. The frameworks will be particularly useful for decision makers in different settings, as they will be able to review the evidence and the judgments made by the panel, and decide whether to adopt the recommendation (use it directly) or to adapt to their particular setting.

Pablo_Alonso_Coello

Dr Pablo Alonso

Pablo is a senior researcher at the Iberoamerican Cochrane Centre (Biomedical Research Institute Sant Pau). His research is focused on systematic reviews and guideline methodology, with a special interest in incorporating the patients and the public perspective into health care decisions. He is responsible for the Barcelona GRADE center, and a Board member of the GIN and of the GRADE Guidance Group.

Patient decision aids

The project will also develop decision aids to enable comparisons between multiple potential options. The decision aids will include information on the most important outcomes, the certainty we can place on the results of the research results, as well as practical considerations about the self-management interventions being considered (e.g., burden). These tools will be designed for the use in face-to-face clinical encounters or to be used by patients in advance of a clinical encounter. The aids will be produced in six languages (English, French, German, Spanish, Dutch and Greek) using plain language.

All the tools will be available in a web-based platform that is being developed and will be made available in early 2022. The platform will include many other things, but this is something that will rather be revealed in another blog post.

29. January 2021

What Works in Implementing Patient Decision Aids in Routine Clinical Settings? A Rapid Realist Review and Update from the International Patient Decision Aid Standards Collaboration

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

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.

COMPAR-EU News #5

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

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.

18. December 2020

Do Chronic Obstructive Pulmonary Diseases (COPD) Self-Management Interventions Consider Health Literacy and Patient Activation? A Systematic 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

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.

27. November 2020