Horizons IV (Amsterdam): The next chapter

The fourth Haemnet Horizons focused on the work undertaken since the previous meeting and to agree next steps in achieving the core objectives, to enhance the role of nurses in future haemophilia services across Europe.
For this workshop, which was sponsored by Sobi and CSL Behring, we were joined by Patrick de Smet from Belgium, who as a haemophilia nurse and representative of the Belgian patient association, brought a unique perspective to proceedings. In addition, two members of Horizons, Nanda Uitslager (Netherlands) and Simon Fletcher (UK), have been appointed to the EAHAD nursing committee, joining Kristian Juusola (Finland). This strengthens the opportunities for collaboration in facilitating changes in practice across Europe.
The day began with participants sharing their experience of Horizons so far through 50-word stories written in small groups – these are captured below.

 

A central part of the day was sharing the research and other actions that members of the group have led since the last meeting in London.

Education

Objective: Ready access to haemophilia-related education developed and delivered by haemophilia nurses.
Following discussions in April, Simon, Cathy, Kristian and Norma developed a questionnaire which they circulated to 22 nurses across Europe and 19 responded. This pilot study showed that members of this group are well educated and confirmed that the primary source of education is self-directed learning through scientific/nursing journals and professional organisation websites. It also highlighted that access to educational opportunities are an issue in terms of time and expense.
Actions:
  • This group agreed to review the questions in light of responses and to circulate a revised version to a much wider group of nurses across Europe.
This study built on the discussions about education for haemophilia nurses being unevenly spread in Europe. Provision is greater in Western Europe than elsewhere and while there is a European haemophilia nurse curriculum, there is no Europe-wide education programme.
Discussions in London also showed that resources are more readily available in some countries than others and there is a need to share proactively, particularly for the UK. A summary of areas identified on the day is included in European Curriculum and Educational Opportunities.

Patient-focused care

Objective: The development of patient-focused care to be based on equal collaboration between all healthcare professional, including doctors.
During discussions in London, it was recognised that enhancing the ways we support patients is the key to improving care. The objective of patient-focused care is to empower the patient and family/carer to take the lead in determining the management of their care. If patients are to carry out this role effectively, they need access to education and information about every aspect of care management in relation to their condition.
One type of the resource that is available for clinicians to share with people with haemophilia and their carers is the Haemnet animated videos (HaemHacks) that provide information about aspects of managing haemophilia. These cover subjects such as, pharmacokinetics, EHLs and self-infusion.
Actions:
  • In advance of the meeting in Amsterdam, Sara and Eva from Spain worked with Haemnet to pilot translating one of the videos, pharmacokinetics, into Spanish. The script was translated and during the meeting WovenInk worked with Sara to record the voice over. Since the meeting a dubbed version of the video has been produced that Sara and Eva will check and test. One of the areas that we need to test is whether there is a need to also edit some of the written word in the animations before progressing to translate further videos.
  • The group re-confirmed that Spanish would be the first language to use as this would open access to the information within them to a much wider audience. After Spanish, in order to of preference to open access to these educational videos, it would be French, Italian, German and Russian.
Further projects that the Haemnet Horizons group wished to explore in meeting this objective include:
  • Members to each revisit the education resources they have locally and share them within the group.
  • Developing an aid to infusion technique in the form of a checklist and evaluating its effectiveness and uptake among young people (age 15-18 years) and young adults (19-25 years). Haemnet is currently working on a self-infusion guide that will be published on its website and can be translated into European languages.
  • Developing a guideline for patients about the management of small bleeds and recognition of joint bleeds.

Research

Objective: For nursing research to become the norm and to find ways of making it possible and practical for all haemophilia nurses to engage in it.
Research is an integral component of the haemophilia nurse’s role but it is also clear that it is time-consuming. Group members are already busy so they agreed that the most useful research projects would involve aspects of clinical practice that are already in place and, with support from other group members, advice and support from Haemnet in shaping proposals/securing resources, and by sharing resources, valuable work could be done to enhance the nurse’s role.
Following the research undertaken between the Berlin and London meetings, Nanda (The Netherlands) delivered an oral presentation of her research on how frequently patients with mild haemophilia at the 2018 World Federation of Haemophilia (WFH) meeting in Glasgow. She utilised the Haemnet Horizons network to gather examples of clinical practice in Europe and is now also recognised among her peers as someone who can plan a research project and see it through to completion.
In April, the Haemnet Horizons group agreed:
  • To form a research sub-group ‘Haemnet Horizons Research’ to develop and support research by group members
  • To develop a project ‘The Switch Factor’ to evaluate how best to support patients switching to extended half-life clotting factors and ultimately to develop and share protocols
  • To publish the results of their research.
In Amsterdam, Greta (Netherlands) shared feedback on the research groups work since London. They developed a research questionnaire focused on switching to better understand current practice. They shared the questionnaire with colleagues including those attending 2018 WFH in Glasgow and they had 49 responses to the 91 that were distributed.
Actions:
  • The group are in the process of analysing the results of the survey and writing an article for publication.
  • An abstract of the results has been submitted as a poster at the 2019 EAHAD Congress.
 

Leadership and Research

It was clear from the discussion in April that nurses are aware of the challenges they face when trying to improve clinical practice. Although they play a pivotal role within the multidisciplinary team and carry responsibility for their clinical decisions, they felt their leadership is not fully acknowledged and are keen to work together to further develop their skills and confidence.
During the day in Amsterdam, discussion of leadership centred around leading research. An overview of the research process was shared by Mike (Haemnet), see diagram below.
 
This was followed by members discussing in their research ideas in pairs and supporting each other to identify possible research topics.
Actions:
  • Individuals will further develop their ideas into proposals with support from the Haemnet team in doing so, where wanted. One study has already taken up this offer and the lead has successfully secured funding.
  • Explore with the group which of these could be supported by a research sub group through email.

Haemnet website

The redeveloped Haemnet website with it’s new format that is designed to be clearer and more interactive is now live. It provides messaging and notifications, access to training, events (with the potential for online booking), a knowledge base of published articles (with tagging) and a community section for forums and closed groups such as Haemnet Horizons. There is still some redevelopment to complete and it will have an interactive list of treatment centres so that nurses can access colleagues and signpost patients who are travelling/relocating.
During the discussion in London, the Horizons group felt that the prototype is a simple and helpful design. Members suggested that it would be useful to have an area devoted to research, translation into languages other than English and links to other haemophilia sites. Overall, the nurses welcomed the redesign and felt the site would be a useful tool for clinical practice and research and provide a forum for continuing relationship development among Horizons colleagues.
Action:
  • To sign up to the redeveloped website
  • A Horizons group has been created within the communities pages for members to continue connecting between meetings.

Summary

Haemnet Horizons IV confirmed nurses’ commitment to collective action to improve haemophilia care in Europe. Members demonstrated what is possible through the research they have completed, development of practical resources to use with their patients by piloting translation into Spanish and the further actions to realise their core aspirations. They collaborated throughout the day on their core aspirations as identified in Horizons II, further demonstrating that strong relationships have been established and realising an active Europe-wide network.