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According to the World Health Organization (WHO), patient empowerment is “a process through which people gain control over decisions and actions affecting health”. At the individual level, patients are empowered when they have the knowledge, skills and autonomy to make decisions, the ability to think critically about these decisions and the ability to influence their own treatment goals. At the community level, patients are empowered when they can effectively participate and engage in advocacy activities, in evaluating and co-designing healthcare services, in guiding research and innovation, and in ensuring that health policies are centred around their needs. 

For people living with diabetes (PwD), patient empowerment is particularly critical, as the treatment complexity requires them to become experts in their condition. PwD are expected to make daily self-care decisions regarding food, physical activity, monitoring and medication with only limited input from their medical team. Empowered PwD are best placed to become full partners in their own care, to determine what outcomes matter most to them, to take informed decisions to achieve them, and to advocate for the needs of the diabetes community at large.  

Obstacles to PwD empowerment are legion and encompass, for example, levels of health literacy among PwD, socio-economic factors, lack of healthcare system integration and low awareness and recognition of the need for patient empowerment and participation in their care.    

Education, digitalisation of health and the interaction between PwD and healthcare professionals (HCPs) are some of the key aspects that can be leveraged to promote PwD empowerment and overcome these obstacles.  

Structured diabetes education and peer support programmes are essential to help PwD access information, understand their condition and the key principles of diabetes management and grasp how the healthcare system works in their country and, in particular, how to receive emotional and social support.  

As a complementary tool to diabetes education, digital therapeutics such as apps, web portals, telemedicine, and digital education services, also play a key role in supporting PwD self-management and empowerment. These allow PwD to track information related to their condition, make informed self-management decisions, and share their personal health data with HCPs to analyse trends and personalise their treatment.  

HCPs are also instrumental in welcoming PwD empowerment and ensuring that PwD are full partners in their own care. This entails establishing a collaborative relationship and facilitating shared decision helping PwD feel more in control of their condition and care. 

In this special edition of our newsletter, we highlight some of the key aspects of PwD empowerment and the IDF Europe’s initiatives that aim to support increased engagement of PwD in their care as well as in advocacy and research activities across Europe.

Scroll down to read more about:

• Empowering and engaging PwD through innovations in healthcare delivery
• Improving the interaction between HCPs and PwD
• Involving PwD in research projects
• Empowering young diabetes advocates
• Creating a world for PwD of all ages

Innovations in healthcare delivery:
empowering and engaging PwD

Low PwD empowerment is considered one of the main barriers to the delivery of high-quality diabetes care. Not being provided with or having access to self-management education and not being engaged in the decision-making process regarding their treatment often lead to poorer health outcomes, low satisfaction with the healthcare systems and low quality of life for PwD. This is why, in recent years, many innovations have emerged targeting patient empowerment as a facilitator to improving engagement and self-management, promoting adherence to treatment, helping people cope with their condition, and ultimately improving clinical outcomes and quality of life. Supporting these innovations is the digitalisation of care through broader use of data, technologies, data analytics and artificial intelligence.

New approaches that are currently being adopted to facilitate PwD empowerment revolve around: 

• Improving engagement and motivation through increasing support and access to knowledge and information (including shared decision-making) 
• Supporting self-management through digital tools and apps 
• Supporting self-management and providing psychological support through peer-to-peer interactions 

To highlight these innovative developments and ways in which new innovations can foster PwD empowerment, we recently launched a publication on “Delivering Value through Innovation in Diabetes Care Delivery”, accompanied by a webinar, during which, our guest panellists shared their insights on empowering and engaging PwD.  

Watch the video to learn more! 

Improving the HCP-PwD interaction for better health outcomes, quality of life and resilient health systems 

Empowerment represents a shift in attitude not only for PwD, but also for their HCPs. Through the establishment of a quality relationship with PwD, HCPs can facilitate shared decision-making and gain a better understanding of their personal goals, needs and priorities and help them personalise their individual care programme. However, developing a quality, collaborative relationship is not always free of obstacles. These range from lack of time and resources to attitudinal issues reflecting, for example, the stigma that is often attached to Type 2 diabetes (T2D).   

To facilitate PwD engagement, HCPs need to be able to share information in an easily understandable format and establish an environment in which PwD feel comfortable asking questions and sharing their viewpoints, preferences, needs and priorities. This allows HCPs to better understand the specific situation and living environment of their patient, and therefore helps them personalise treatment. The shift towards a more collaborative relationship between HCPs and PwD also requires non-medical support and advice that PwD might need to achieve health outcomes that most matter to them to be considered as part of standard care. 

Understanding the key components of the HCP-PwD relationship can help identify what needs to be put in place to ensure that this interaction is effective and promote a patient-centred and holistic approach to diabetes management. To explore this, IDF Europe has recently established a working group as part of a new platform of People living with T2D and other types of diabetes in Europe, which is specifically looking at the key components of a successful relationship between PwD and HCPs.

The initial work of the T2D platform will be officially presented during the IDF Europe Symposium at EASD, on September 19, in which three panels will address different approaches/solutions that contribute to improving the quality of the PwD-HCPs interaction. 

The panel discussions will focus on three complementary approaches including the HCP as a member of a multi-disciplinary team; the implementation of guideline-directed therapies; and the engagement of HCPs and PwD in clinical trials to improve their interaction and health outcomes. 

Learn more about the programme and how to register here

Meaningful involvement of PwD in Research Projects 

Meaningful engagement and participation in research projects contribute to PwD empowerment and ensures that PwD’s perspectives are represented in the development of new innovations in diabetes care.  

As an organisation representing both people living with diabetes and healthcare professionals, IDF Europe takes an active role in ensuring that PwD are placed at the centre not just of their care but also of any study, treatment and/or medicine and device development, and that their experiences, needs and perspectives are reflected at all stages, and not just during treatment. To do this, we contribute to several research projects and other initiatives aimed at improving diabetes management and prevention and ultimately improving the lives of people living with the condition. 

Within the project, IDF Europe has established a Patient Expert Panel (PEP) to facilitate the engagement of PwD and to ensure that their experiences, needs, and preferences are heard.

The PEP has, for example, contributed to the development of an inclusive informed consent process and of a communication and messaging framework; has reviewed training materials for people in the trial; and has participated in various outreach activities. 

Read more about the work of our PEP here

Within this project, we initiated a dialogue between scientists and young PwD to explore the best ways of broadening understanding of scientific research among the general public.

In an effort to connect scientific research and the public, young people living with diabetes shared their stories, inspirations, and experiences about living with diabetes in the video “It’s good to be connected”. 

To learn more about IDF Europe’s participation in EU research projects, visit our website

Empowering a new generation of young diabetes advocates

Next to being able to optimally manage their condition, empowered PwD are also best placed to engage in advocacy activities that represent and support the interests and needs of the diabetes community at large. 

When PwD become part of a community of peers, their individual voices get amplified, and their struggles can become part of a united message that is brought forward by a community as a whole rather than as individual instances. Moreover, being part of a vibrant and strong diabetes community is key for PwD who regularly face similar challenges, as peers can provide emotional and instrumental support as well as education, skills training for self-management, and create a sense of belonging and empowerment. 

In this context, patient organisations play a crucial role in equipping advocates with the skills and opportunities to meaningfully and effectively participate in policy development and research, and to raise awareness of diabetes among the general public. This is particularly important for youth advocates of today who can contribute to a more equitable tomorrow for all PwD.  

IDF Europe strongly values the essential role that young people play in raising awareness and advocating for the rights of people living with diabetes.

This year’s YLC was held in Krotoszyce, Poland, from 10 to 16 July 2022. It was co-hosted by the national Polish Diabetes Association and the Polish Diabetes Association of Złotoryja. The theme of the YLC 2022 was Diabetes and Humanitarian crises with the following subthemes: Diabetes and COVID-19; Diabetes and Humanitarian man-made Crisis; and Diabetes and Natural Disasters/Climate Change. 

With a strong focus on ‘learning-by-doing’ and input from both expert guest speakers and fellow youth advocates, participants engaged in a series of interactive presentations and workshops addressing topics aligned with IDF Europe’s advocacy and communication priorities, which helped understand the work carried out by IDF Europe and built bridges with the youth advocates for future work. 

Several of the camp sessions focused on the ongoing war in Ukraine. We, at IDF Europe, felt that everyone involved in health advocacy has a responsibility to ensure that all those affected by humanitarian crises receive the assistance and care to which they are entitled.

To learn more about the IDF Europe’s YLC 2022, read the full report here

Intergenerational Solidarity:
Creating a World for All ages

To celebrate the day, we created a campaign to get people thinking about this topic and how intergenerational solidarity can be generated. The campaign involved asking our youth members to consider three questions relating to: how diabetes care in their respective countries differs by generation; what changes they hope to see for people living with diabetes across generations in the future; and how their advocacy work can create a world for all ages. As one of IDF Europe’s priorities is to strengthen the voice of those living with diabetes, the hope is that our youth members feel empowered and supported to not only use their voices to raise awareness on the issues relating to generational discrimination in access to care, support and technology, but that they feel empowered and supported to act on these issues. As advocates in their respective countries, our youth members have opportunities to impact and effect change. 

We received responses and viewpoints from over 10 different countries with the common theme being - age discrimination when it comes to accessing diabetes services, diabetes education, and access to diabetes tools and technology. However, not only were there systemic issues for people with diabetes across generations, but stigmatisation and stereotyping were also raised as factors which have an impact on different generations of people living with diabetes. By creating a space for PwD to use their voices, share their views and to discuss how they can impact change, the hope is to encourage and empower others to do the same and to foster intergenerational solidarity. 

What do you think you could do, as a young advocate, to ensure that the changes you hope for across generations of PWD, become a reality? 

You can see some of the wonderful responses below and you can find more on our Instagram account, Facebook page and website.

Read more testimonials here!

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