Horizons II (Berlin): Developing Communities of Practice

Haemnet convened Haemophilia Horizons I in October 2016 and Haemnet Horizons II in July 2017.

People with haemophilia and their clinical teams across Europe are responding to an evolving treatment landscape and the nurses at both events are keen to be proactive in addressing the consequences for their practice. During these workshops, haemophilia nurses from Estonia, Denmark, Finland, France, Germany, the Netherlands, the UK, Ireland, Serbia, Spain and Sweden met and discussed the the professional and educational issues impacting on the future shape of haemophilia nursing in Europe. Having come together as a forward-thinking community, those attending the Berlin event agreed threeareas for action, on which they could begin to work together as three distinct yet overlapping “communities of practice” to enhance future ways of working.

The participants included:

  • Kristiina Karp (Estonia)
  • Maj Friberg Birkedal (Denmark)
  • Kristian Juusola (Finland)
  • Malika Makhloufi (France)
  • Karin Andritschke (Germany)
  • Norma Kellegher, Ann Marie Ryan, Brid Booth Fleming (Ireland)
  • Nanda Uitslager, Marit de Roo (The Netherlands)
  • Ljiljana Rakic (Serbia)
  • Sara Garcia (Spain)
  • Linda Myrin Westesson (Sweden)
  • Simon Fletcher, Anne Wareing (UK)

For the next meeting, additional participants will include those unable to attend this time (shown below) and nurses from other countries not currently represented:

  • Josipa Belev (Croatia)
  • Kathi Stein Oldenburg (Germany)
  • Claudia Nitze (Germany)

The meeting was jointly sponsored by Sobi and CSL Behring; neither company had any input into the content of the meeting, which was co-facilitated by Sandra Dodgson (Haemnet) and Debra Pollard (Haemnet Trustee). The objectives of the meeting were to:

  • Connect new participants with the ones that attended Haemnet Horizons I and support them in becoming a core group of ‘drivers for change’ across Europe.
  • Develop more detailed understanding of the areas for action around the key themes identified at Haemnet Horizons I and agree an initial core programme of action.
  • Identify further themes based on groups reflections and potentially offer additional ‘food for thought’ inputs, as used during the first workshop.

A summary of the day and the potential outputs were captured by WovenInk in the form of visual minutes.

 

Horizons II Meeting Summary

The participants began by sharing something interesting about themselves and their expectations of the day. They also took time to revisit the headlines from Horizons I and to share with their new colleagues some of the themes they had explored so that everyone was starting from a shared baseline. They also updated the appendix to the report from Horizons I with changes in practice and for new colleagues to add their perspectives (see Appendix 1).

Discussion in this session also covered:

  • The “pros and cons” of expanding the nursing role.
  • Taking greater responsibility as nurses, for most this meant working with their patients to individualise care and support them in managing their life with haemophilia.
  • Identifying the core “common principles” in haemophilia nursing and ensuring that education and research are focused on developing truly evidence based practice while recognising the different views and constraints in each country on the nurses’ role.
  • The opportunity to have some of the materials already developed to be translated for wider use. For example, the technical aspects of some papers/educational materials would be useful as would some of the animations developed by Haemnet, which could be dubbed into different languages.

The group also heard inputs from an interview with Martin Bedford as chair of the EAHAD nursing committee and feedback on Haemnet’s discussion with Cedric Hermanns and Aislin Ryan at EAHAD 2017 on the desire to work together and make the most of their differences to improve practice across Europe.

Agreed focus for action

From a long list of aspirations for action across Europe, three core aspirations were agreed as an initial focus:

  • 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
  • For the development of patient-focused care based on equal collaboration between all healthcare professional, including doctors.
  • Ready access to haemophilia-related education developed and delivered by haemophilia nurses.

These aspirations were identified by taking an appreciative inquiry approach and first exploring the individual and collective strengths of people in the room. The focus for this was sharing experiences of great/excellent haemophilia care. The groups’ strengths included:

Evidence based knowledge and experience Shared decision making – accepting of patients decisions
Patient focus and families/carers Self-confidence
Trust – continuity, counselling, listening, basis for teaching Empathy
Support – facilitative relationships, addressing fears/knowledge gaps, holistic (people not in the room), psycho-social management Able to see what further work could be done
Teaching – understanding of a rare disease with complex information to share, communication, coaching, reviews, prophylaxis and optimising care Creativity

Building on these strengths led to the identification of something on which we could make some headway on together – a real shift in practice, something aspirational that is not yet the ‘norm’. The three areas listed above were identified and in three groups participants went on to identify:

  • What they wanted to achieve in each area and what it would look like when they succeeded
  • An initial action plan with first steps that were practical and achievable.

Following this the group agreed next steps for each of their aspirations by identifying:

  • What they would do
  • How they would do it
  • By when
  • What resources might be needed to support them.

 

Nursing research

AIM: To achieve collaborative recognition of nursing research and visibility of nurses in collaborative research with other members of the clinical team.

This group felt it was necessary to encourage each other to publish, to overcome fears of engaging in research and to connect projects. They want to find ways of making it practical for nurses to participate in research, for it to be ‘normalised’ rather than having to undertake research in their own time, and for the contribution of nurse-led research to be recognised within the accreditation process for haemophilia centres. Wherever possible, support to be secured from a range of sources to provide both off and online (web based and Applications) activities. The immediate objectives were:

  • To establish a ‘buddy group’ within 3 months of the meeting in Berlin to provide a focus for working towards the above aim.
  • To identify the necessary resources to provide
    • Teaching sessions designed to support nurses to share the outputs/outcomes of their research, for example, abstract writing in advance of submissions for next year’s WFH congress (deadline – November 17th2017); writing for submission to The Journal of Haemophilia Practiceand other nursing publications, including Masters reports; and practical/technical support with statistics as part of Haemnet research programme activities
    • To develop a proposal for submission to the EAHAD call for research grants (deadline: 1 October 2017), potentially with a focus on transition from paediatric to adult services.

 

Patient-focused care

AIM: To enhance patient focused (individualised) care across Europe by sharing expertise and developing evidence for changes in practice.

This group felt that a practical example of working together to achieve a change in practice within one of the member countries would be an opportunity to demonstrate the potential for delivering the above aim. The immediate objectives were:

  • To undertaking a specific project in the Netherlands that would be informed by practice from all the countries that are members in this growing Haemnet Horizons’ community. The project is to be completed by 2019. This will be informed by the 2018 publication of results from a similar project in London.
  • To develop a questionnaire and circulate to all Haemnet Horizons participants (email circulated w/c 24 July 2017) to better understand the arrangements for consultations – how often haemophilia patients are invited/ attend the clinic for consults. There will also be a questionnaire to determine
    • Need for consults (HCP view and patients’ view)
    • Patient’s quality of life
  • A pilot study to be undertaken to determine the feasibility of an annual nurse-led consultation in the host country.

 

Access to education – for nurses delivered by nurses

AIM: To provide access to education for nurses by nurses that facilitates connectivity, communication and exchange of practice

This group felt it is widely accepted that nurses learn from each other and value the networking opportunities presented by meeting at conferences but this needs to be supplemented by access to each other through appropriate routes and technology. They recognised the challenges of language and cost will need to be addressed. They also saw this as an opportunity to begin working with the EAHAD nursing curriculum at a practical level. The immediate objectives were:

  • To use SurveyMonkey with nurses in the nurses across Europe that are members of the Haemnet online network to collect their views on the ease of access and the usefulness of the educational opportunities available to them.
  • Views on these will also be sought from nurses in other specialties, as well as asking them about how they communicate with each other.
  • The information will be analysed to determine how web based platforms, such as that provided by Haemnet, could be developed for use by nurses across Europe.

 

Summary

By working in a different way, the participants at these initial Haemnet Horizons meetings have created the foundations for nurses across Europe to come together to enhance their practice.

The network members agreed to identify other opportunities for meeting and engaging nurses from other countries as they arise over the coming months, such as Industry events and the EAHAD conference, and to come back together in the first half of 2018 to review progress, support each other to continue to develop as a community and to identify further actions.

Members of this ‘engine room’ also explored the potential to join the EAHAD nursing committee so that the different focus of the strands of work being taken forward by each group could achieve more through effective integrated working.

It’s a great opportunity that funding and facilitation has created, one on which members of the network expressed excitement at making the most of in supporting each other to change nursing practice to the benefit of people with haemophilia and other bleeding disorders across Europe.