Since we began creating standards for information sharing, we have consulted patients at all stages of the journey, to ensure their voices are always reflected in our work. In 2018, we will continue to work in partnership with key patient-facing organisations including, National Voices, The Coalition for Collaborative Care, The Richmond Group, The Royal College of Physicians Patient and Carer Network and The Wellcome Trust, as well as seeking new alliances that support a person-centered voice, shared decision-making and self-care.
This year we’ve collaborated with the Wellcome Trust to produce a series of educational animations that illustrate the positive impacts of data sharing in health and social care. These public-facing videos are designed to raise awareness about data sharing, for example, showing people how information can support research into better treatments and care. They will be published shortly on www.understandingpatientdata.org.uk.
We are also forming a coalition of partners that will campaign for improved communication between service providers and the people using those services, in conjunction with PRSB standards. In 2017 we invited several fantastic speakers to our AGM, as well as sharing their stories through blogs, videos and presentations. While we already have patient and citizen representation on our board, assurance committee and projects to develop standards, we are keen to expand this and would like even more people to become involved in our workshops, communications, videos and events.
Moving forward, the PRSB is supporting the Royal College of General Practitioners and the Academy of Medical Royal Colleges to improve communication for outpatients. This year we will complete our transfer for care standards, leading to better communication between professionals. These standards include the e-discharge from hospital to GP, the emergency care discharge, the crisis care discharge, mental health discharge, outpatients letters and clinical referral letters. These standards will support professionals across health and care to share the right information and deliver high quality care for patients.
We recognise that it is just as important to communicate with patients directly, and want to empower people to become engaged in their own health and care. In addition to sharing patient and carer stories through real-life case studies, we want to know what is important to people when data is being shared between organisations. If you’re a patient, carer or citizen who would like to become involved in our work, please contact Julie.firstname.lastname@example.org or email@example.com.