European Initiatives unite to address Integrated and Holistic care needs for Rare and Complex Conditions
On the 12th and 13th of April 2018, two rare-disease focused initiatives -RD-ACTION and INNOVcare- united to deliver a large workshop, intended to share the state of the art in terms of integrated, holistic care for people with rare diseases, and to explore the possible added-value which European Reference Networks (ERNs) might bring to this important area.
It has long been recognised -and indeed was affirmed through the 2016 Recommendations to Support the Incorporation of Rare Diseases to Social Policies and Services issued by the Commission Expert Group on Rare Diseases- that to adequately care for people living with rare diseases and enable them to realise their potential in all areas of life despite the rarity of their condition, the traditional medicine-focused approach is insufficient. For a start, only around 5% of rare diseases have a dedicated therapy. Furthermore, these conditions are often severely disabling and socially isolating, bringing with them a host of challenges for patients and families which reach into every aspect of people’s lives: a glimpse of this burden emerged through the 2017 survey of 3000 patients, conducted via EURORDIS’ survey initiative Rare Barometer Voices, within the INNOVCare project. With rare conditions resulting in complex symptoms and disabilities, it is necessary to embrace a broader mission of ensuring an integrated and holistic approach to care.
The INNOVCare initiative voices the everyday challenges of people with RD and aims at bridging the gaps in coordination between health, social and support services in EU MS. The project is developing and testing a holistic, person-centred care pathway: using a resource centre for RD and regional case managers, to centralise the coordination of care and to ensure the link between care providers. The project is also developing a series of good practices and roadmaps to support the implementation of integrated care for RD across Europe and the up-scaling of the pilot care model to other European countries. Resources developed by the project so far include for e.g. the outline of the role and of the training of case managers for RD as well as factsheet on the need for integrated care for RD.
Against this backdrop, the Policy and Integration WP of RD-ACTION, the European Joint Action for Rare Diseases, maintains a particular focus on providing support for the conceptualisation and implementation of ERNs and has organised many workshops at explore how the 24 ERNs can address some of their shared policy challenges together. The opportunities and avenues for providing integrated, holistic care for rare and complex diseases have not yet been explored by ERNs in earnest – hardly surprising, given their myriad of responsibilities and duties concerning, for instance, setting-up their Networks, providing virtual care, engaging patients, considering how to establish registries and create clinical practice guidelines, etc. However, it is recognised that the support and resources which matter most to many people living with a rare disease often fall into this category of ‘integrated care’, which was defined for this workshop as follows:
Integrated care pathways are based on a person-centred, multidisciplinary, holistic, continuous and participative care provision. They enable the exchange of information and the coordination between health, social and other support services located at national, regional and local levels. Integrated care pathways are expected to improve the quality of life of patients and their carers, while also reducing their care burden. Integrated care is expected to increase the quality of care and lead to efficiency gains in care provision.
These two projects were therefore keen to explore how and where ERNs might add value to the work initiated under the INNOVCare project. For instance, ERNs could:
- Spread understanding of the benefits of joined-up, holistic care pathways for patients (encompassing the less-strictly-medical professionals, such as physiotherapists, psychological therapists, and social support appropriate to the specific needs of people with rare diseases and their families);
- Support and propel the drive to identify how best to provide holistic care for patients with rare and complex conditions and define this in patient care pathway (or at least identify the core components of the sorts of support which should be available to patients in the paramedical and social spheres, whilst acknowledging that national procedures and specificities will often vary.)
- Embed good practices to support integrated care for patients in their constituent HCPs (and eventually ‘affiliated’ partners), and in time help to diffuse good practices to broader health systems;
- Contribute to the collection and integration of data, to improve knowledge and understanding of rare diseases and the impact of patients and wider society.
The workshop united 67 participants from 22 countries, with diverse backgrounds: policy makers (national/regional competent authorities and former members of the Commission Expert Group on Rare Diseases); Patient representatives (both European Patient Advocacy Groups (ePAGs) and members of the Social Policy Advisory Group); European Reference Networks and their member HealthCare Providers (HCPs); representative of social services; and academics. The workshop was hosted at a well-established Resource Centre for rare diseases, Frambu, which is famed for its innovative, person-centred approach to meeting the needs of those living with a RD (and the needs of their families and carers).
The programme began with an analysis of the positioning of integrated, holistic care for RD in European policies and Recommendations, before moving on to examine the ways in which Centres of Expertise (typically termed ‘HCPs’ in the ERN framework) can fulfil the vision espoused in guidance such as the EUCERD Recommendations on Quality Criteria for centres of Expertise for Rare Diseases in Member States. The results of a small survey conducted amongst the ERNs were presented, and case studies were delivered by ERN EYE, ERN-ITHACA, and ERN-TransplantChild, to allow the groups to brainstorm the opportunities and challenges for ERNs seeking to make an impact in this vast and heterogeneous arena. The near-final outcomes and conclusions of the pilot of case management for RD developed and implemented with the INNOVCare project were also presented, as inspiration and as a means of sharing the status quo across the broad RD field.
The workshop concluded with five parallel breakout sessions, in which participants discussed together how to make progress in optimising concepts such as care coordination and case management, knowledge generation, and patient engagement in the provision of integrated and holistic care. The themes of the discussions arose from MS interviews and work conducted within the INNOVCare project as well as from the work of the RD-ACTION and of the previous joint action identifying key issues to support people living with a RD overcoming their daily life challenges and to support the provision of holistic and integrated care for RD.
The groups sought to identify ways to disseminate and embed good practices in the heterogeneous European health and social systems, and debated the role ERNs -and, particularly their constituent HCPs- might play. The discussions highlighted the unprecedented opportunity ERNs offer, in terms of their potential to become a ‘voice’ to ascertain the true extent of the needs and burden facing people with rare and complex diseases, but also to ‘set the standard’ in terms of defining the sorts of paramedical specialists, social actors, services and support which should be available to patients in their local environments: often, this will entail encouraging Centres of Expertise/HCPs to fulfil their crucial roles in establishing links and forming collaborations with institutions and professionals in the wider health and social care environment, to enable their patients to receive a more integrated and holistic experience. The need for balance and collaboration was also emphasised, however – mechanisms need to be found for experts and stakeholders not formally involved in ERNs to nonetheless collaborate with the Networks for mutual benefit.
The key discussion points of the breakout sessions and the other key outputs of the workshop will be elaborated and uploaded to the dedicated RD-ACTION web-page in the coming weeks (the agenda and PowerPoint presentations are already available via this link, along with a recording of the main sessions), and also the INNOVCare site.