Lived experience consultants to a child sexual abuse inquiry: Survivor epistemology as a counterweight to legal and administrative proceduralism.

Background: The Independent Inquiry into Child Sexual Abuse (IICSA) in England and Wales was the first major child abuse inquiry internationally to appoint survivors to a formal role. The appointment of the Victims and Survivors Consultative Panel (VSCP) reflects growing recognition of the value of lived experience expertise and a broader shift in the policy domain towards public involvement and co-design.

Objective: This article draws on research that sought to understand both the experiences of a group of victims and survivors with related professional expertise consulting to a public inquiry, and the impact they had on the operation of the inquiry.

Facilitating return of actionable genetic research results from a biobank repository: Participant uptake and utilization of digital interventions.

Research participants report interest in receiving genetic research results. How best to return results remains unclear. In this randomized pilot study, we sought to assess the feasibility of returning actionable research results through a two-step process including a patient-centered digital intervention as compared with a genetic counselor (GC) in the Penn Medicine biobank.

The ENGAGE study: a 3-arm randomized hybrid type 1 effectiveness and implementation study of an in-home, collaborative PCP model of remote telegenetic services to increase uptake of cancer genetic services in childhood cancer survivors.

Background: Germline cancer genetic testing has become a standard evidence-based practice, with established risk reduction and screening guidelines for genetic carriers. Access to genetic services is limited in many places, which leaves many genetic carriers unidentified and at risk for late diagnosis of cancers and poor outcomes. This poses a problem for childhood cancer survivors, as this is a population with an increased risk for subsequent malignant neoplasms (SMN) due to cancer therapy or inherited cancer predisposition.

Supporting safe swallowing of care home residents with dysphagia: How does the care delivered compare with guidance from speech and language therapists?

Introduction: Dysphagia affects up to 70% of care home residents, increasing morbidity and hospital admissions. Speech and language therapists make recommendations to support safe nutrition but have limited capacity to offer ongoing guidance. This study aimed to understand if recommendations made to support safe and effective care are implemented and how these relate to the actual care delivered.

The rod synapse in aging wildtype and Dscaml1 mutant mice.

The retina is an intricately organized neural tissue built on cone and rod pathways for color and night vision. Genetic mutations that disrupt the proper function of the rod circuit contribute to blinding diseases including retinitis pigmentosa and congenital stationary night blindness (CSNB). Down Syndrome cell adhesion molecule like 1 (Dscaml1) is expressed by rods, rod bipolar cells (RBCs), and sub-populations of amacrine cells, and has been linked to a middle age onset of CSNB in humans.

UK Vessel Health and Preservation Framework 2020: a users' survey.

The review and update of the UK Vessel Health and Preservation Framework 2020 (VHP2020) was undertaken by a working group that included members of the Infection Prevention Society, the Royal College of Nursing, the National Infusion and Vascular Access Society and the Medusa Advisory Board and was launched in 2020. The VHP working group developed a survey to understand whether the VHP2020 had reached its intended audience, and what respondents thought were the benefits and drawbacks of its use in practice. Although the survey response was lower than expected, the responses received were largely positive and have provided feedback on how the VHP2020 is being used and some of the benefits.