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This article* is an update from Dr Henrietta Hughes, Patient Safety Commissioner for England. This week I had the pleasure of meeting with Janet Williams MBE who with EMMA M. and INFACT have done so much to provide information and support to patients taking Sodium Valproate. Women are still not getting the information needed to make the choices that are right for them at different stages of their lives. Despite regulators advice patients continue to be dispensed sodium valproate in plain white boxes with no warning labels or patient information leaflets. Janet shared a devastating story with me about a patient who was only told about the harmful effects of sodium valproate after she had conceived. There are many complex and interdependent factors and a huge amount of work needed to get this right. So I was very pleased to meet with David Webb Chief Pharmacist and Aidan Fowler to get a deeper understanding of the barriers and how I can help to overcome them. It can be done - national safety systems have led to rapid identification and remediation of problems such as with ventilators during the pandemic. When information is available and people work collaboratively the system can respond swiftly , compassionately and in a joined up way. Information and data was central to my discussion with Scott Pryde and the Outcomes and Registries team at NHS England. When we have access to outcomes data including patient reported outcomes and experience (also known as PROMS and PREMS) then it will be possible to have more meaningful conversations about choosing the right treatment, possible side effects and other treatment options. It also relies on high quality and complete data and we discussed barriers to sharing data and helpful innovations to overcome this. Patient voice and how this is heard and acted on was the theme of my meeting with Helen Hughes. I met Sean O’Kelly, Chief Inspector of Hospitals at Care Quality Commission and talked about Safe and Well Led organisations. Leaders who actively listen and join the dots between safety, culture, patient and worker voice know more, know sooner and can take remedial action to keep people safe. My question to healthcare providers is ‘Who is the voice of patients at Board?’ Meeting the needs of all patients is key and in my call with Dr Habib Naqvi MBE of the NHS Race & Health Observatory we discussed the risks to patients when medical devices such as pulse oximeters work less effectively on patients from black or minority ethnic backgrounds. Let’s make sure that patients views are central to design and delivery - that’s how we will get it right for everyone. I’m pleased to see the NHS England Operating Framework has a key objective to ‘Strengthen the hands of the people we serve’ Mark Cubbon. For this to become a reality we need to have meaningful conversations with people, patients and everyone who works in the healthcare system to lift these words off the page and into our everyday experience. #patientsafetycommissioner #patientvoice #data #sodiumvalproate This article was first published on LinkedIn.

This research-based guide has been co-developed by Healthcare Improvement Scotland, the University of Dundee and the University of Glasgow to provide an overview of PROMs. It also aims to prevent the exclusion of people with low literacy skills and/or learning disabilities from PROM administration.

Patient-reported outcome measures (PROMs) are increasingly used in health care. To capture the patient’s perspective, patient involvement in PROM development is needed. This study, published in BMC Health Services Research, aimed to investigate why PROM developers do or do not involve patients, how patients can be successfully involved and what the negative aspects and benefits of patient involvement are.

In this paper, published in Journal of Patient-Reported Outcomes, authors report the findings of a realist synthesis that aimed to understand how and in what circumstances patient reported outcome measures (PROMs) support patient-clinician communication and subsequent care processes and outcomes in clinical care. They tested two overarching programme theories: PROMs completion prompts a process of self-reflection and supports patients to raise issues with clinicians. PROMs scores raise clinicians’ awareness of patients’ problems and prompts discussion and action. They examined how the structure of the PROM and care context shaped the ways in which PROMs support clinician-patient communication and subsequent care processes.

Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients’ subjective assessments of their symptoms and functional status and also their quality of life. Whilst the importance of involving the public in PROM development to increase the quality of the developed PROM has been highlighted this practice is not widespread. There is a lack of guidance on how public involvement (PI) could be embedded in the development of PROMs, where the roles can be more complex than in other types of research. This paper, published in Journal of Patient-Reported Outcomes, provides a review and sets out an emerging framework for fully incorporating PI into PROM development.

Patient‐reported outcome measures (PROMs) are questionnaires that collect health outcomes directly from the people who experience them. This review, published in Health Expectations, critically synthesises information on generic and selected condition‐specific PROMs to describe trends and contemporary issues regarding their development, validation and application.

Medicines and Healthcare products Regulatory Agency (MHRA) presentation on their patient involvement strategy and how they are using Patient Reported Outcomes (PROs).