Shared decision making

  • NICE guideline
  • NG197
  • Published: 

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Shared decision making: the importance of writing clinical letters directly to the patient

Implementation

As part of the initial implementation of this guidance, baseline assessment tools were completed by 6 key directorate services, which were nominated by their respective director for involvement. Following completion of the service-level baseline assessment tools, areas of non-conformity could be identified and common themes relating to why the guidance was not being met, escalated for discussion within the SHSCT SDM steering group.

Regionally, an external stakeholder meeting was also established in 2023, co-chaired by the Public Health Agency (PHA) and Strategic Performance and Planning Group (SPPG). The membership on the group includes representatives from all the HSC trusts in Northern Ireland (senior clinical leaders and personal and public involvement teams), PHA, the Regional and Quality Improvement Authority, the NICE implementation consultant for Northern Ireland, primary care representatives, and service users.

This group has been valuable for shared learning and agreeing actions that are required to collectively ensure all the guideline recommendations are met, particularly when there were recognised barriers that needed a regional approach to remedy.

Three regional task and finish workstreams, chaired by the SPPG and PHA, have a primary focus on the following:

SHSCT representatives were appointed to all 3 regional task and finish groups and report back to the local trust SDM steering group to progress key actions and ensure the local and regional work plans are consistent and joined up.

Recommendation 1.2.20

Across the 6 directorate pilot areas, there was limited assurance to confirm that recommendation 1.2.20 was being fully met. While several areas were writing to the referrer and copying the person into the correspondence, this practice was not fully meeting the requirements of recommendation 1.2.20, which states that "when writing clinical letters after a discussion, write them to the patient rather than to their healthcare professional, in line with Academy of Medical Royal Colleges' guidance on writing outpatient clinic letters to patients. Send a copy of the letter to the patient (unless they say they do not want a copy) and to the relevant healthcare professional".

The trust's urology service, which formed part of the pilot work, agreed to look at this recommendation more closely, with an initial focus on those who are currently being cared for within a urology cancer pathway.

Patient interviews

Following an initial MDT meeting in February 2024, a series of meetings took place initially between Macmillan engagement staff and members of the SHSCT SDM project team that was primarily composed of urology and cancer MDT members. These meetings determined the purpose and focus of the project, agreement on a suitable project methodology, as well as what would be achievable within capacity and the key areas where learning and improvement was required.

To provide a safe and empathic space, the project team agreed that patient interviews with Macmillan peer facilitators would likely optimise engagement and sharing of information. A total of 30 patients who were on the SHSCT urology cancer pathway were randomly selected from patient lists, with 15 people subsequently consenting to take part. A total of 7 Macmillan peer facilitators carried out the interviews on a one-to-one basis, via telephone or online, depending on the person's preference.

People were asked before the interview to think about or identify a specific letter they had received, either from a nurse specialist or medical professional, which would be used to base the conversation on.

The Macmillan peer facilitators carried out each interview, as directed by an agreed 'conversation guide'. This guide was co-produced by the Macmillan peer facilitators and was designed to support the interviews based on the key areas within the NICE guideline. This guide ensured consistency and comparability across all interviews. After each interview, peer facilitators completed a feedback report and submitted it to the Macmillan engagement team.

Before the interviews took place, the Macmillan peer facilitators took part in a briefing meeting with key members of the SHSCT SDM project team, to ensure they had clarity of purpose and intent and to be able to respond to any queries from facilitators about the process.

Analysis of feedback

The Macmillan engagement team used Braun and Clarke's 6-step thematic analysis method to evaluate the peer facilitators' feedback:

  • phase 1: data familiarisation

  • phase 2: systemic data coding

  • phase 3: generating initial themes

  • phase 4: developing and reviewing themes

  • phase 5: refining and naming themes

  • phase 6: writing the report.

Peer facilitators reviewed the final report to ensure accuracy and authenticity.

Sharing the findings

Following completion of the report and approval by the project team, the report was shared with the co-chairs of the SHSCT SDM steering group and the Executive Director of Nursing and Midwifery, who was the appointed director lead for this work. Upon their agreement, the following actions were taken:

  • A finalised report was presented to the SHSCT safety and quality steering group on 29 January 2025. This was in keeping with the terms of reference and agreed governance arrangements for the SDM steering group.

  • The report was presented to the SHSCT urology MDT on 6 February 2025, to provide feedback and learning from the clinical teams directly involved in the project. Approval was given from the senior leadership team to finalise and submit this work to NICE for publication as a case study.

  • The report was shared with the SHSCT SDM steering group.

  • The report was shared with the chairperson of the regional task and finish group relating to clinical letters, to support the development of regional guidance for healthcare professionals.

  • As part of the SDM steering group communications plan, a short PR video is now being planned to showcase the role of the Macmillan peer facilitators in this project and the key outcomes that have been identified. It is hoped that this will be completed by September 2025.

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