A deeper perspective on SMIs

Self-management interventions (SMIs) relate to steps taken by individuals, families or communities to prevent, improve or manage health conditions, illnesses or diseases with or without the help of healthcare professionals [1]. The effect of SMIs can be measured by a range of concepts such as the level of self-efficacy, knowledge and the quality of life of the person with the chronic disease, among many others. COMPAR-EU studies outcomes which have been deemed relevant by patients, healthcare professionals and researchers.

The SMIs used in the realm of chronic diseases have a gender component. While sex and gender can sometimes be conflated, it is important that we first define these terms. Sex is determined by biology, anatomy, and physiology, while gender can be viewed as a broad, psychosocial construct. Gender encapsulates socially and culturally determined roles, behaviours, attitudes, identities and norms between men, women and gender-diverse people [2]. Sex and gender are often intertwined but do not necessarily correlate.

A gender perspective

Historically, women have been omitted from research and clinical trials. Research that did include women did not segregate the data by sex or gender to better understand women’s positions, perspectives and outcomes [3].

There are a number of basic SMIs which can reduce a person’s risk of chronic disease, improve their health status or reduce the likelihood of further deterioration of their health condition. These include regular exercise, the maintenance of a healthy diet and abstinence from smoking. However, the barriers to achieving a healthier lifestyle can differ for men and women.

SMI techniques and additional risks differ by gender

The prevalence of obesity is higher in women compared to men [4]. Many young girls, who would have once considered themselves sporty, leave sports clubs once they reach adolescence [5]. Sport is often not as well promoted and encouraged for women in society as it is for men, and sports clubs may not be designed to support young women’s needs. As adults, women are more likely to perform zero hours of physical activity per week compared to men [6]. However, women are responsible for 3 times more unpaid care and domestic work compared to men [7]. In the EU, 80% of care work is informal and the vast majority of informal carers are women [8]. As a result, there is often less opportunity for women to do physical exercise and factor in a healthy diet. For countless women, unpaid caring roles are prioritised over the self-management of their own health [9]. Obesity can have a profound impact on a woman’s health, it can present as a serious risk factor for a myriad of complications during pregnancy and it can affect the health of future generations.

Diabetes is another chronic disease which can be prevented and managed with a healthy diet and physical exercise. SMIs for diabetes can be more complex for women compared to men due to presence of female hormones. During a woman’s reproductive years, diabetes can disrupt the normal menstrual cycle. Conditions such as oligomenorrhea and amenorrhea are common, and diabetes can lessen the number of reproductive years leading to fertility concerns [10]. Furthermore, women with diabetes have a higher risk of cardiovascular disease compared with men [11]. Thus, women have a number of additional risks and concerns in the self-management of diabetes which may not be relevant to men.

In all EU countries except for Denmark, more men are daily smokers compared to women [6], yet women who smoke cigarettes have more difficulty permanently quitting compared to men [12]. Smoking cessation is vitally important for women, as female smokers are more likely to develop COPD and experience heart failure compared to male smokers [13, 14]. Once COPD, heart disease or other chronic illness is diagnosed it is strongly recommended that the individual reduce or abstain from smoking [15]. The addiction pathways between men and women can differ, with women more likely to smoke as a stress response, while men are more susceptible to environmental cues and generally have a greater dependence on nicotine [16]. Thus, nicotine patches may be more effective for men than women. Tactics to encourage individuals to quit smoking must address these gender differences.

A way forward

For many women, SMIs are not an empowered choice but their only solution to managing chronic disease. Competing responsibilities between employment and unpaid care work may prevent women from visiting a healthcare facility. Women are more likely to be out of work, in temporary, or part-time work compared to men [17] and women represent the majority of low earners [18]. Thus women may be unable to take a sick day from work or may not have the financial capacity to pay to see a healthcare professional, where healthcare is not free at the point of use. In patriarchal societies and communities, women may depend on a male partner or family member for transport to a health facility and thus, may have to forgo treatment when none is available.

Compliance with an agreed treatment regime is of crucial importance. This is dependent on the support,  trust  and  good communication with the healthcare provider. It is also important that other sources of information that a patient may utilise are reputable and verified. Compliance will only succeed if treatments are tailored to the patients’ needs and the patient is supported to continue with treatment and address any challenges or barriers that they may face. There is evidence to suggest that women seek more emotional supports compared to men and these in turn have an effect on their health outcomes in chronic disease [19]. Thus it is pertinent that support groups, counselling services and other psychosocial supports are available, accessible and appropriate for women as they navigate life with a chronic disease.

Reducing the global burden of non-communicable diseases is listed as a target of the Sustainable Development Goals [20]. To effectively achieve this, gender and its impacts must be adequately considered. While it is important to understand the gender differences in the self-management of chronic diseases, a life-course approach must also be taken which details how gender can impact SMIs at different life stages.

References

[1] COMPAR-EU. COMPAR-EU. 2022 06 December 2022]; Available from: www.self-management.eu.

[2] Smith, P.M. and M. Koehoorn, Measuring gender when you don’t have a gender measure: constructing a gender index using survey data. International Journal for Equity in Health, 2016. 15(1).

[3] Yakerson, A., Women in clinical trials: a review of policy development and health equity in the Canadian context. International Journal for Equity in Health, 2019. 18(1).

[4] Cooper, A.J., et al., Sex/Gender Differences in Obesity Prevalence, Comorbidities, and Treatment. Curr Obes Rep, 2021. 10(4): p. 458-466.

[5] Alberga, A.S., et al., Overweight and obese teenagers: why is adolescence a critical period? Pediatric Obesity, 2012. 7(4): p. 261-273.

[6] ECIR data tool. 2019 06 December 2022]; Available from: https://cancer-inequalities.jrc.ec.europa.eu/.

[7] Seedat, S. and M. Rondon, Women’s wellbeing and the burden of unpaid work. BMJ, 2021: p. n1972.

[8] EC, Informal care in Europe. 2018: Luxembourg.

[9] Nguyen, T.N.M., et al., Systematic review of perception of barriers and facilitators to chronic disease self‐management among older adults: Implications for evidence‐based practice. Worldviews on Evidence-Based Nursing, 2022. 19(3): p. 191-200.

[10] Livshits, A. and D.S. Seidman, Fertility Issues in Women with Diabetes. Women’s Health, 2009. 5(6): p. 701-707.

[11] Peters, S.A.E., R.R. Huxley, and M. Woodward, Diabetes as a risk factor for stroke in women compared with men: a systematic review and meta-analysis of 64 cohorts, including 775 385 individuals and 12 539 strokes. The Lancet, 2014. 383(9933): p. 1973-1980.

[12] Smith, P.H., et al., Sex/gender differences in smoking cessation: A review. Preventive Medicine, 2016. 92: p. 135-140.

[13] WHO, Gender, Women and the Tobacco Epidemic. 2022, World Health Organization: Manila, the Philippines.

[14] Huxley, R.R. and M. Woodward, Cigarette smoking as a risk factor for coronary heart disease in women compared with men: a systematic review and meta-analysis of prospective cohort studies. Lancet, 2011. 378(9799): p. 1297-305.

[15] Son, Y.-J. and H.-J. Lee, Association between persistent smoking after a diagnosis of heart failure and adverse health outcomes: A systematic review and meta-analysis. Tobacco Induced Diseases, 2020. 18(January).

[16] NIH. Are there gender differences in tobacco smoking? 2022 06 December 2022]; Available from: https://nida.nih.gov/publications/research-reports/tobacco-nicotine-e-cigarettes/are-there-gender-differences-in-tobacco-smoking.

[17] Eurostat. More people in work. 2022 06 Dec 2022]; Available from: https://ec.europa.eu/eurostat/cache/digpub/european_economy/bloc-1d.html?lang=en.

[18] Eurofound. Minimum wage – Yet another gender divide? 2021 06 December 2022]; Available from: https://www.eurofound.europa.eu/publications/blog/minimum-wage-yet-another-gender-divide.

[19] Dwarswaard, J., et al., Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies. Health Expectations, 2016. 19(2): p. 194-208.

[20] UN. The Sustainable Development Goals. 2015 06 December 2022]; Available from: https://sdgs.un.org/goals.

This information is highly valuable for patients, professionals, guideline developers, researchers, and policymakers as well as for industries developing IT support systems, pharma and insurance companies. All this information has been reported in an interactive platform which includes decision aids for patients and providers, evidence to decision frameworks, summary of findings tables and recommendations per disease. Lay person summaries are included in the platform.

We are aware that our results can make an important contribution in bridging the gap between knowledge and practice, summarising what is currently available and developing further knowledge and support to the field.

Our mission: help stakeholder’s decision-making

To continue the COMPARE-EU efforts after the project termination in December, we launched Self-Management Europe. This is the not-for-profit European Research and Innovation Centre conceived of as a partnership of organisations working on patient empowerment and self-management. The project is a joint venture initiative led by the Netherlands Institute for Health Services Research (Nivel), OptiMedis, the Avedis Donabedian Research Institute (FAD and the European Patients’ Forum (EPF). It works in collaboration as an affiliate member of the other COMPAR-EU partners.

Its mission is to help stakeholder’s decision-making by providing, creating, and disseminating new and innovative knowledge for better self-management and patient empowerment with a special emphasis on chronic conditions. Its main objectives are:

• Providing updated (scientific) knowledge on patient empowerment and self-management.
• Promoting research and generating new knowledge on how to improve self-management with special emphasis on vulnerable people and chronic conditions.

We aim to build capacity for research, policy and interventions through workshops, webinars, seminars, and knowledge exchange and help to set strategic directions in European research and policy on self-management, empowerment and chronic disease and create opportunities for innovation and transfer of self-management research for the mHealth application.

Self-Management Europe Alerts

Our first initiative has been to produce Self-Management Europe Alerts providing practical recommendations on how to implement practices that enhance self-management and patient empowerment. So far, four have been published and are being translated to different EU languages to enhance their impact. We intend to create a network with other interested organisations to continue enhancing self-management and patient empowerment knowledge and implementation.

If you are interested, please contact us at contact@self-management.eu

This advocacy conference marked the culmination of  5 years of interdisciplinary work to identify, compare, and rank the most effective and cost-effective self-management interventions for adults in Europe living with high-priority chronic conditions. The conference took place on 15 & 16 November, 2022, in Brussels, Belgium.

It gathered approximately 70 stakeholders who exchanged experiences and expertise on self-management (SM) best practices, shared lessons learned from implementation of SM policies, and discussed how to best integrate and incorporate the project’s findings across various settings. Other topics, like the  Self-Management Europe Initiative, project lay-language materials, and self-management policy implementation practices were also feature in the programme.

Lyudmil Ninov  joined a session on the Self-Management Europe initiative and patient involvement, while Kaisa Immonen led an important session on health literacy and the social determinants of healthcare. Valentina Strammiello opened and closed the event, and guided discussions throughout the two half-days.

An important conclusion: Having self-management plans and procedures in place should be strongly encouraged for these to become an integral part of healthcare systems across Europe.

After a Day One Recap delivered by Valentina Strammiello, Dr. David Somekh (EHFF) moderated a discussion on the topic of ‘Self-Management in the Digital Era’. To begin with, Pablo Alonso (Senior Researcher at Sant Pau Biomedical Research Institute), guided the audience through the COMPAR-EU platform, which includes all the project results as well as decision aids for the conditions covered in the project.

As a member of the COMPAR-EU patient panel, Alessandra Veronese pointed out in her presentation the need for patient involvement in the clinical research of digital technologies. According to her, “patient involvement can help shed light on new trends, and the data generated by wearables can be used for estimating risk”.

For Dr. Richard Pratt (GP and Founder FORMYDOCTOR), self-management primarily means working ‘smarter’. While going digital can improve the process, safety should remain a central consideration. He noted that only about 20% of apps meet rigorous safety standards, which represents a risk. However, he continued by pointing out that the bigger risk is ‘doing nothing’. To conclude this morning session,

Dr. David Somekh invited the audience to reflect on opportunities for sustainable development:

During the last 5 years, COMPAR-EU has identified, compared, and ranked the most effective and cost-effective self-management interventions (SMIs) for adults in Europe living with one of the four high-priority chronic conditions: type 2 diabetes, obesity, chronic obstructive pulmonary disease, and heart failure.

The main objective of the conference was to present the key findings of the project, and to release and promote the COMPAR-EU platform, the main product of this research project. This innovative platform includes: a repository of the studies assessed, and the tools used to measure the different outcomes on the four chronic conditions, the network-meta-analysis results, the contextual factors, and the cost-effectiveness analyses, as well as the decision-making tools. These tools designed for patients, clinicians and other stakeholders; and they include summary of finding tables, evidence to decision frameworks, and a decision aid.

Poster Session

The conference started with a poster session. The scientific committee accepted a total of 20 posters representing institutions from Croatia, Germany, Greece, Spain, Switzerland, and The Netherlands, which were divided in three sections: Methods in self-management interventions (SMIs), Self-management interventions research involving stakeholders perspectives, and Evaluation and implementation of (components of) self-management interventions. The authors of posters attending the conference presented their works to the judges and the attendees.

The three winners are: Sofia Tsokani, Ana Isabel Gonzalez González and Melixa Medina Aedo!

Opening by Rosa Suñol and Asun Sanchez

After the poster presentations, we had the special welcome opening by Dr. Rosa Suñol, President of the Board of Trustees of the Avedis Donabedian Research Institute (FAD), and Asun Sanchez, General Director of health research training and accreditation, from the Health Department of the Balearic Government, who highlighted the importance and benefits of self-management, not just for increase the quality of life of patients, but also for healthcare professionals and for the entire healthcare system.

Keynote
Using the Behaviour Change Wheel approach to increase physical activity and break up sitting for the benefit of cardiovascular disease risk and mental wellbeing

Then, we had the honour of listening to a talk by Dr. Angel Chater, from the University College London and the University of Bedfordshire, introducing key aspects to achieve a change of behaviour increasing physical activity, and presenting the programme “The active Herts”, in which physical activity offers are tailored to the needs of local people. After this introductory speech, we concentrated on the conclusions of all partners that worked on this project.

On the first day, FAD, European Patient forum (EPF), Netherlands Institute for Health Services Research (NIVEL), University of Ioannina (UOI), Institute for Medical Technology Assessment (iMTA) and the Institut de recerca del Hospital de la Santa Creu i Sant Pau (IR-HSCSP) presented the main results from the different work packages, including the taxonomy, the core-outcome-sets, the promising self-management interventions and components based on the NMA and economic estimations for cost-effective interventions. The outputs produced by these work packages have been integrated into the platform to facilitate reaching different stakeholders. Several challenges have been presented related with the review, including large heterogeneity among the studies and lack of relevant data to perform some of the analysis. Some recommendations for further research were provided.

COMPAR-EU platform: interactive workshop

After this, the attendees participated in a workshop that showed the main features of three of the main sections of the platform: the Repository of documents, the Recommendation section, and the Decision Aids. Participants were able to explore the platform on their laptops or smartphones, and feedback was collected. This led us to an open discussion, guided by OptiMedis, who also presented the next steps about the implementation of the platform; concluding that a successful implementation would require changes at different levels, and the support of the recent initiative Self-management Europe could help to increase the platform value.

Keynote
Self-management in Europe: what have we learnt and what should we do next?

To finalise the conference, Dr Angela Coulter gave a keynote speech titled “Self-management in Europe: what have we learnt and what should we do next?”, in which she highlighted three main points:

1. Self-management support should be guided by the evidence but personalised to the individual;
2. Implementation involves leadership, infrastructure and demonstration; and
3. Evaluation should take place alongside implementation, formative as well as summative.

What’s next?

The consortium has concluded a long journey through these five years, with a large amount of work done. We have found where research gaps persist on self-management interventions’ research, and through the platform, we are now providing these findings to the scientific community, as well as the rest of the stakeholders, that can also make use of the interactive decision-making tools.

Through all this work we have also recognised that if our objective is patient involvement and empowerment, our job does not stop here; this is just the beginning. We must keep working to provide patients with the tools to achieve an appropriate self-management of their diseases, as in the words of a patient panellist, “Patients need to know how to recognise when something is going wrong and what to do, they will not have their good doctor or nurse a lifetime”.

In total we interviewed 38 clinicians and managers from hospital and community-based settings. The interviews focussed on how to successfully implement the decision tools at an organisational level.

The preliminary results show that there are important factors at different levels. There are different roles and responsibilities among team members that are important for the use of decision tools in practice. Enthusiasm among healthcare professionals to implement decision tools can be driven by the fact that the platform is evidence-based and that patients can benefit from support in the decision-making process. Financial incentives might be necessary to motivate organisations to implement decision tools. However, some participants believe that these incentives are unnecessary because patient health is what matters the most.

In order to test whether the domains identified in the initial interviews are applicable in other healthcare settings, we conducted a focus group with participants from other COMPAR-EU countries (Belgium, the Netherlands, Greece).

In addition, we conducted a workshop with other relevant stakeholders such as mHealth start-ups, pharma, researchers, management organisations, to explore how decision tools can be embedded in the value chain and how we can market them to different end users. We gathered different outputs related to the resources required, key activities, communication channels and costs. We were happy to see that participants were excited about the various features of the platform and also showed great interest in participating in our next event: the COMPAR-EU Hackathon in September. There we want to develop specific use-cases in detail to ensure the sustainability of the platform.

These, together with the outcomes of the workshop, interviews and focus group, will be included in the core business plan for the decision-making tools of the COMPAR-EU project.

Click here to sign up for the COMPAR-EU hackathon.

With the end of the COMPAR-EU project foreseen for end of the year, the European Patients’ Forum (EPF) team has begun its preparations for further outreach efforts, and a big event to close our collaboration on this project at the end of the year.

Audio-visual assets to support our uptake

As part of its involvement in the COMPAR-EU project, the European Patients’ Forum (EPF) has produced a series of lay summaries – on COPD, Heart Failure, Obesity, Type 2 Diabetes core outcome sets, and on the Taxonomy process, among others. Producing lay summaries is an important step to share project results in accessible language for patients and non-expert audiences.

To facilitate their visibility and uptake, the EPF team has focused the last months on preparing the lay summaries for wide dissemination. First, EPF has begun working with professional translation services to translate 8 lay summaries into 6 languages of the Patient Panel – Maltese, Romanian, Hungarian, Italian, Polish, and Gaelic (Irish)/Catalan. Translating these documents into more languages (German, French, Spanish, and others)  helps to ensure that they will be available to wider multilingual audiences.

At the same time, EPF held a tendering process for design materials at the end of 2021 and has begun working with the selected designer on various tools. This collaboration will allow us to transform the lay summaries into attractive and easy to use documents and leaflets, which will support their uptake by lay-users including patients as well as the wider public. Additionally, we will also produce 4 short videos to promote the project and its main results. This work will be merged with our translations, to create visually attractive and multilingual documents which can be used by stakeholders outside of the immediate ecosystem of the project partners, and with the aim of reaching audiences such as various European patient organisations, national level organisations, individual patients and other public audiences.

Final Advocacy Event in Brussels, November 2022

EPF would be leading the Closing Advocacy Conference in November 2022 in Brussels, Belgium. This Advocacy Event will be a bouquet of stakeholders and perspectives. Over the summer, EPF and other COMPAR-EU partners will be working towards building the agenda of the event, identifying and inviting speakers from across Europe and with deep understanding and interest in self-management (interventions). Currently, the plan is to have a two-half days event with 60 to 80 participants onsite and virtual element.

What to expect in 2023 from the project?

As previously communicated, the official end of the Project is planned for December 31st 2022. However, this does not mean that the dissemination of achievements and outcomes of COMPAR-EU will cease. Two activities will be of particular importance for the sustainability and scalability of the project beyond this date.

Self-Management Europe Initiative – find out more about the initiative here – this partnership will be a crucial part when it comes to continue working on the topic of self-management. In a nutshell, It is an exploitation initiative of the COMPAR-EU project with the aim of developing the potential of people, professionals, organisations, systems, and communities for creating a society that strengthens empowerment and self-management in people with chronic diseases.

The Interactive COMPAR-EU Platform must be fully operational and functional and available to all interested parties and hopefully, 2023 will be its pivotal year. As a reminder, among many other materials – all lay summaries should be available to the public in 10 different languages.