RarERN Path
The RarERN Path approach foresees six consecutive phases (see Fig.1), each with different and specific aims.
# Phase 1 – Mapping of existing patients’ care pathways and patients’ stories
# Phase 2 – Design of an optimised common patients’ care pathway
# Phase 3 – Consensus on an optimised common patients’ care pathway
# Phase 4 – Key Performance Indicators (KPI) definition
# Phase 5 – Refinement
# Phase 6 – Pilot phase
# Phase 1 – Mapping of existing patients’ care pathways and patients’ stories
Aim: To get the picture of the current practice in rCTDs care organizations across the different ERN ReCONNET centres and collect patients’ stories and perspectives on their experience with their care and their disease.
Phase 1a – Collection of existing patients’ care pathways
Phase 1a is dedicated to the mapping of existing PCP followed in all the HCPs of the Network by means of an ad hoc questionnaire; the questionnaire focuses on the organizational analysis of the PCP that patients with rCTDs follow from the referral to the follow-up in each centre involved in the Network for each disease included in ERN ReCONNET. The results of the questionnaire of each centre should then be transferred into a Flowchart that graphically represents the different phases of the PCP followed by patients in the centre (diagnosis, treatment and monitoring). The Flowchart needs to be validated by the HCP representative, who should carefully review the Flowchart and confirm whether the pathway currently in place in the centre was correctly represented in the Flowchart. The validation process can take place either via email or via web-conference/face to face meeting. In this phase, the HCP Representative also has the possibility to send informative material regarding the PCP used in the centre in order to collect useful additional details on the care offered in the centre.
Expected output: Flowchart that graphically represents the different phases of the patients’ care pathway followed in each centre.
Phase 1b – Collection of patients’ stories
In order to collect the views and perspectives of patients, a survey based on the principles of narrative medicine is co-designed in English with patients affected by the disease.
The Narrative Medicine is a medical approach developed in the United States in the late Nineties by Rita Charon, Professor of Clinical Medicine and Director of the Program in Narrative Medicine at the Columbia University College of Physicians and Surgeons. This approach is aimed at integrating clinical practice with the stories of illness of patients, enabling healthcare professionals and other actors to understand the perspectives of patients and to address their needs and concerns more effectively. Rita Charon considers narrative medicine “as a new frame for health care, offering the hope that healthcare systems can become more effective thanks to the recognition and the taking into consideration of patients and their experience of illness (16). The narrative medicine approach, in fact, is particularly valuable as it allows individual patients to tell their stories of their illness, to express their point of view, perceptions and to narrate their experience regarding their care and their pathway (17). In this perspective, the organisation of survey is an efficient tool to reach a high number of patients affected by the specific disease, highlighting the importance of how the patient perceives the disease and understanding the level of awareness and the experience lived by patients.
The survey consists of:
- an introduction aimed at explaining the scope of the survey and mentioning the eventual further use of the stories,
- a demographic series of questions to have a profile of the responders,
- a free-text space dedicated to write the stories (3600 - 5000 characters) with a set of questions to support and inspire the patient while telling the story.
Once the survey is finalised, it should then be translated into different EU languages, possibly involving patients and patients’ representatives from the different countries in the validation process. The survey is then launched via the EU Survey Platform (18) – survey platform developed by the European Commission and available for free - across the communities of RCD patients in Europe thanks to the collaboration of the Patients’ Organisations that can play a major role in the dissemination of the survey.
Expected output: Co-design of a survey for the collection of patients’ stories (possibly in different languages)
# Phase 2 – Design of an optimised common patients’ care pathway
Aim: Optimization of the current care provided to patients in a common patients’ care pathway and elaboration of patients’ stories.
Phase 2a – Optimization of the current care provided to patients in a common patients’ care pathway
Each validated Flowchart representing the different phases of the PCP in each centre is then merged into a single optimised Flowchart that illustrates a common PCP followed in the HCPs of the ERN for diagnosis, treatment and monitoring. The common PCP Flowchart should include all the common elements and eventual discrepancies identified in the questionnaires, as well as the main challenges and suggestions related to the pathways that were mentioned by clinicians.
Expected output: Optimised common patients’ care pathway Flowchart taking into account of the patients’ care pathways followed in the HCPs for diagnosis, treatment and monitoring (see example in Fig.2).
Phase 2b – Elaboration of patients’ stories
The patients’ stories should be anonymously collected possibly by the team managing the project and reviewed with the patients’ representatives who dealt with the translations in order to identify recurrent topics and specific comments related to patients’ care and pathway. In particular, a list of needs and priorities related to care and care pathway should be identified in the stories for each country by the patients’ representatives with the support of the team managing the project. A final list of the main elements and points presented in the stories is created by merging the feedback collected among the different countries, and it is then validated together with the patients’ representatives. In addition, patients’ stories could also be further explored by analysing the frequency of the words used in order to identify in a word cloud which topics are considered most relevant by patients when talking about their disease and their pathway (Fig. 2). This result can be particularly useful during the discussions to be performed in Phase 3. Other very relevant topics can also be identified with the aim of raising awareness in the clinical and public community on the impact of the disease and to enable a better understanding of the patients’ journey and perspectives.
The list of the main topics described in the patients’ stories should then be integrated into the common PCP Flowchart and with clinicians’ challenges and suggestions.
Expected output: Integration of the list of needs and priorities related to care and care pathway extrapolated from the patients’ stories into the optimised common patients’ care pathway Flowchart.
# Phase 3 – Consensus on an optimised common patients’ care pathway
Aim: To reach a consensus among stakeholders on an optimisedcommon reference organisational model on the patients’ care pathway to be followed for the specific disease.
In this phase, the different stakeholders analyse together each individual phase (diagnosis, treatment and monitoring) of the optimised common Flowchart of the PCP by means of dedicated working group(s); the working group can be organised in face to face (preferable option) or virtual meetings. The different stakeholders that should participate in the working group include patients and patients’ representatives, caregivers, expert clinicians, health economists and also hospital managers. The working group can use specific tools that enable each participant to provide an opinion on the procedure and on the challenge/topic discussed, for example, by means of coloured cards that can be used to express their point of view raising the appropriate colour (red for challenges, yellow for integration and green for comments). The discussion should also include the challenges, suggestions and eventual discrepancies identified in the clinicians’ questionnaires and in the patients’ stories. During the discussion, any element raised by the participants should be considered and discussed in order to reach the two main goals of the reference organisational model: i) a common model to be followed by HCPs to ensure an optimised organisational scenario for the management of RCD ; ii) to ensure the adaptability and flexibility of the optimised common organisational model in the different HCPs’ settings and in the different healthcare systems.
Each phase must be agreed by the majority of the participants and represented in a graphic flowchart in order to be considered as an ERN optimised common reference organisational model on PCP to be followed for the specific disease (Fig. 3). In order to reach the consensus, the final approval of the final graphic flowchart can take place either via email or via face to face/virtual meetings. A free live discussion is highly suggested to ensure that all stakeholders are able to provide their opinions and interact with each other; however, the consensus can be reached by a formal agreement or a Delphi.
Expected output: Optimised common reference organisational model on the patients’ care pathway to be followed for the specific disease.
# Phase 4 – KPI definition
Aim: Co-design of Key Performance Indicators (KPI) needed to assess the performance of the organisational procedures, their impact on the disease outcome and the economic and organisational sustainability for the healthcare providers.
Once the optimised common reference organisational model on PCP to be followed for the specific disease is defined, specific KPIs need to be co-designed with different stakeholders to monitor the following domains in each HCPs:
- Process indicators: to measure how the organisational model may facilitate an effective provision of care (e.g. time from patients’ referral to access to the centre, time to diagnosis, etc.);
- Outcome indicators: to measure how the organisational model can impact on the disease outcome both from the point of view of the clinicians (e.g. how an organised care flow may impact on the disease activity and damage) and of the patients (e.g. satisfaction survey on the care flow and organisation);
- Sustainability indicator: to measure the organisational and economic efficiency.
The KPIs should be co-designed in dedicated working groups (face to face or virtual) and a consensus must be reached among the different stakeholders.
In addition, a set of instructions should be also co-designed in order to be integrated with the optimised common PCP. The instructions might include examples of best practices that can be used to implement a specific procedure, to make patients more aware that they are part of a dedicated pathway, etc. The need to detail pragmatic examples of best practices already in place is particularly important to ensure the adaptability and flexibility of the organisational model to the different local healthcare settings and to underline that different solutions can be followed and applied in the same organisational model (e.g. ulcer medication clinic that can be organised as an in house or as an outsourcing service).
Expected output: Detailed list of the Key Performance Indicators (KPI).
# Phase 5 – Refinement
Aim: Development of the final version of the optimised common care pathway model, of related KPIs, and of instructions for its application in specific healthcare contexts.
After Phases 3 and 4, it is important to assess the eventual inclusion of additional KPIs and instructions that can be useful to implement the common organisational model. This should be done at HCP level, interacting with the multidisciplinary team, hospital management team, patients’ organisations, etc., in order to identify eventual KPIs that could be added, based on the single local framework and experience.
Once the common PCP model is finalised, a dissemination plan should be developed and followed by the stakeholders involved.
Expected output: Inclusion of additional KPIs in the optimised common reference organisational model on the patients’ care pathway to be followed for the specific disease. Dissemination of the optimised common reference organisational model across the different stakeholders.
# Phase 6 – Pilot phase (optional)
Aim: To assess the applicability and adaptability of the optimised common patients’ care pathway in specific healthcare providers using related KPIs.
A pilot phase of a minimum 1-year period can be planned in order to assess how the optimised common PCP can be applied and adapted to the specific HCPs’s setting. This phase is particularly important to capture any possible barriers to the application of the organisational flow in a specific context and to identify further specific KPIs to be monitored for this purpose.
Expected output: Application of the organisational model and collection of the KPIs. Identification of eventual barriers to the application of the organisational flow in specific contexts.