10 reasons to join Share4Rare
The use of internet as a health information source has increasingly grown in the last decades. Expressions like Dr. Google or google it, referring to the search for information aimed to clarify our doubts or increase our knowledge, are nowadays daily use terms. Although social media and the Internet are the biggest information repositories in the planet, a true digital Bibliotheca Alejandrina, there are some secondary effects that people must consider. The first one is the huge amount of available information on certain topics, which may overwhelm the users of the World Wide Web. The second one - the opposite case - is the lack of information and the existence of contradictory messages.
In both situations the relevance and the robustness of the information are the best antidote for the users to trust a given source. And, when speaking about health, to trust means to adopt new life habits in order to tackle a disease, interact with professionals or broaden our knowledge in order to make plans for the future.
If we bring this context to rare diseases, people use social media and the Internet for two main purposes: to search for peers and connect with them - people living with the same disease or facing a similar reality – and to have access to information. In both cases and considering how sensitive health information is for the patients and families and the protection on the ethical level and the confidentiality that our case deserves, it is essential to have access to reliable web pages.
Under this scenario and bearing in mind that both patients and families are a major source of knowledge for clinicians and researchers, we created Share4Rare. Share4Rare is a digital platform aimed at addressing the needs of patients, families and researchers by creating a framework that enhances collective intelligence and data exchange to drive research on rare diseases.
Why should you join Share4Rare if you are a patient or a relative?
It is common knowledge that there are multiple forums, social media and instant messaging services that are regularly used by patients and families. Despite this, there are still certain limitations in this sense that make Share4Rare an innovative initiative. Here we highlight the top-10 aspects of our project that will encourage you to join the platform:
- It is an initiative supported by the European Commission under the leadership of a hospital. Hospital Sant Joan de Déu Barcelona coordinates the Share4Rare project, ensuring that the platform fulfils 3 mains goals:
- To educate patients and families in the management of the disease and clinical research on rare diseases.
- To share knowledge among patients and families, enabling the creation of supportive networks depending on specific needs.
- To conduct research by analyzing patient–donated clinical data.
- It is a project designed by patients and focused on their needs. Several patients and patient advocates have participated in the design of the functionalities and the development of the platform. Through three co-design workshops we have inferred which are the main needs in relation to the 3 previous goals and which are still unmet needs in the current social context. Besides, patients are highly represented in the Share4Rare consortium by the World Duchenne Organization and the Melanoma Patient Network Europe.
- It is a global supportive network. Share4rare has developed an environment for the exchange and the interaction of the users with an innovative design. Forums and patients’ groups and pages are limited by a certain topic and a geographical location. In Share4Rare every user is part of the same community and, by means of artificial intelligence algorithms, it prioritizes and invites the most suitable members to help or answer the questions of the members. In this way, the platform will be able to meet general and specific demands, always considering the interests and the experience of the users. Share4Rare will help, in a multi-language environment, to connect with other users standing for the same ultra-rare disease, or to answer specific questions related to certain symptoms such as how to manage epilepsy seizures or recommendations on physical therapy sessions at home. Moreover, each day we offer the top-10 most similar profiles to each user, in order to facilitate individualized interactions via private messaging systems.
- It is a private environment. With the purpose of guaranteeing the confidentiality of the users’ interactions as well as the patients’ medical data donations, we have built a private environment. In order to interact in Share4Rare it is compulsory to be identified by a username and a password after being registered in the platform through the following link.
- Ethics Committee approval. Share4Rare has the approval of the Ethics and Research Committee of Fundació Sant Joan de Déu. Considering that the main goal of our platform is to drive clinical research, this approval is crucial to guarantee the alignment of the ethical principles of biomedicine. In this sense, all users are required to complete, sign, and send the informed consent document. This form collects the general objectives of Share4Rare concerning medical research. Any new scope will require a re-consent by the user.
- Autenthicated identity. In order to participate in Share4Rare, apart from forwarding the informed consent document, we request evidence of the patient diagnosis with the aim of assuring that the platform is only accessible to real users. Although it may seem a long bureaucratic process at first, this will guarantee the construction of a genuine patient network for real patients. All the activities linked to the registration, interaction, and validation of the Share4Rare users are aligned with the General Data Protection Regulation (GDPR).
- Patient advocacy toolkit. In Share4Rare we would like to empower patients so they participate in, drive and lead research initiatives. Thus, information and education is essential in this context. With this purpose, we hav developed a patient advocacy toolkit that will facilitate patient recruitment and patient advocacy.
- Medical content. Receiving information regarding the origin of a disease, its management, care, related research initiatives and therapeutic options is vital for the quality of life of patients and families. Inside the platform we offer general medical content in the context of clinical trials, palliative care, the role of siblings, etc. Besides, during the next weeks we will publish different medical guides about the pathologies that have piloting research projects on Share4Rare. This information can be accessed through the following link.
- Patient registries led by patients. In order to promote a research initiative it is essential to achieve a significant sample of patients to obtain statistically relevant results. In this sense, and considering that in many countries patient registries for rare diseases are not compulsory, there is an urgent need to enable the creation of these data bases through collaboration among patients. At the time users are registered, Share4rare will index symptomatology-linked basic statistical information that will allow the construction of a primordial registry. Then, through collaboration among the users of the platform, new general questionnaires will improve this information and patient quality information will be finally centralized, which may help to develop new research projects in the near future.
- Promotion of research initiatives. We will start piloting two groups of rare diseases in order to test this new collaborative research based on clinical data donation: rare paediatric tumours and neuromuscular disorders. Within both groups there are similar symptoms and potential therapeutic options, which will focus the analysis of the patient-donated psychobiosocial data.