Adelphi Values

Fifty-five years later, the legacy of the Stonewall Uprising continues to shape the onwards march for Lesbian Gay Bisexual Transgender Queer Intersex Asexual/Aromantic+ (LGBTQIA+) rights all around the world. Despite higher visibility and acceptance globally (https://lnkd.in/d69fyvMd), members of this community continue to experience discrimination, violence, and inequitable healthcare to this day (https://lnkd.in/dgTV57Ge). For Pride month, the AV PCO team is continuing to further our mission to foster an environment where every colleague has a sense of belonging, and where diversity in all its forms is valued and championed. We support this mission through ongoing internal initiatives with our DEI-B Groups, as well as the research we conduct. One of our colleagues, Amy Jones and others across the pharmaceutical, academic and COA space will be leading a workshop at ISOQOL in October this year entitled, “Expanding diversity and inclusion strategies to foster representation of LGBTQIA+ communities in Patient Reported Outcome research” which will aim to educate attendees on “LGBTQIA+ representation in PRO research and the role this plays in achieving broader diversity and inclusion in clinical research.” (https://lnkd.in/dX_sXdkY). We hope to see you there! In addition, our team has developed multiple publications with inclusivity in mind such as “Gender is not binary: An online survey to improved inclusivity in sex and gender demographic questions” (https://lnkd.in/dj76vmBj), “Everyone Should be Invited to the Prom: Diversifying Patient Reported Outcome Measures for LGBTQ+ Inclusion” (https://lnkd.in/d-g9k-5n) and “Who We Are Matters: Inclusive Demographic Data Collection in Patient-Centered Outcomes Research” (https://lnkd.in/dNdcYdd9). Look out for future publications which are in development in these areas! We are proud to celebrate Pride and encourage you to explore the resources we’ve compiled for you below: •We Are Pride – booklist compiled by the Boston Public Library in honor of Pride (https://lnkd.in/dfCTUM9) •Resources listing – compiled by the Marsha P. Johnson Institute, organized by U.S. state (https://lnkd.in/enAv4AwB). •LGBTQ+ facts and figures – compiled by Stonewall UK (https://lnkd.in/dgTV57Ge) •Manchester Mind – compilation of resources for LGBTQIA+ folk in the Manchester UK area (https://lnkd.in/dpuvaXC2.) •IPSOS Global survey results – 30-country LGBT+ Pride survey (https://lnkd.in/d69fyvMd)

The Adelphi Values Patient-Centered Outcomes team are pleased to share a publication in #diabetes and #obesity. Open access article here: https://lnkd.in/epkeNRC8 ______________ This qualitative study utilized semi-structured concept elicitation interviews and a supplementary real-time data capture (RTDC) task to explore the perceptions of people with obesity or type 2 diabetes (T2D) around appetite, eating behaviors and drivers/triggers of food choices. Findings confirm prior research regarding impact of drivers/triggers on food choice in people with obesity or T2D and indicate underlying disease state does not appear to influence eating behaviors in people with stable body weight. The study highlights the importance of future research to assess eating behaviors in the context of clinical trials, since understanding how individuals with obesity and T2D perceive eating behaviors could be critical to the success of chronic weight management and T2D treatments.

I am very excited to moderate and co-chair the first DIA Study Endpoints Committee educational session of 2024. Only a few days to go and it is definitely one to put it in your calendar!  With over 7,000 rare diseases identified but less than 10% having an approved treatment, a significant patient need is clearly unmet. Given the complexity of rare disease studies, including the selection of appropriate study endpoints, we are delighted to kick off the DIA Study Endpoints webinar series with a session on the Critical Path Institute's Rare Disease COA Resource (https://rdcoas.c-path.org/), led by Lindsey Murray. The RD-COAC aims to accelerate the development of new treatments in rare disease by simplifying COA selection through collating and sharing available information on COAs that have the potential to be used to support efficacy endpoints.  The session will be held via zoom on 24th June, 3pm - 4pm (BST) and is open to all DIA members (you don't have to be part of the Study Endpoints community). See more info here: https://lnkd.in/e2RHmZzu. The session is being organized by Sabrina Grant, Matthew Reeney, Emuella Flood and myself. A special acknowledgement and huge 'thank you' to Dr. Sabrina Grant for all your hard work kick-starting both the educational series and this particular session - the true driving force behind it all! Join us if you can!

Adelphi Real World is proud to share a new publication "Improving Assessment of Adherence Behaviors and Drivers: Targeted Literature Review and Concept Elicitation Interviews in Multiple Countries and Disease Populations" Bentley S, Exall E, Morgan L, Roche N, Khunti K, Rossom R, Piercy J, Arbuckle R, Higgins VS. Patient Prefer Adherence. 2024;18:1231-1242 Medication adherence is crucial for achieving clinical goals and is often sub-optimal in a real-world patient setting. This qualitative research highlights variations in medication non-adherence, and the different forms and drivers of nonadherence, based on individuals’ demographic and clinical characteristics. The conceptual model developed advances previous models of medication adherence and may support healthcare professionals in the management of patients and how they can be supported to take medication as intended. The research ultimately informed the development of the Adelphi Adherence Questionnaire (ADAQ©), a novel patient-reported outcome measure that can be used across health conditions. For further information on using ADAQ, please contact Andrea Cochrane (andrea.cochrane@adelphigroup.com) https://lnkd.in/eEMrG5Ds

Our team is still at the HTAi conference in Seville, which has the theme ‘A Turning Point for HTA? Sustainability, Networks and Innovation’. We would love to talk through how we can help you in your HTA submissions and gaining reimbursement and discuss our innovative approaches to supporting reimbursement. Contact us at: PROVE@adelphivalues.com #HTAi2024Seville

The Adelphi Values PROVE™ team is attending the HTAi conference in Seville this week! We have a wealth of experience in Health Technology Assessments and all key elements of the process – we understand what it takes to gain reimbursement and what a successful HTA submission requires. We would love the opportunity to talk through our offerings and solutions with you. Please contact PROVE@adelphivalues.com to set up a meeting at the event. #HTAi2024Seville

We recognise that literature reviews are a resource and time intensive exercise where AI can be utilised to increase accuracy and improve efficiencies. Based on our extensive knowledge of conducting literature reviews, Adelphi Values PROVE™ has seamlessly integrated new technologies to create a suite of AI tools to support your literature review needs. For more information please get in touch: PROVE@adelphivalues.com

Looking forward to presenting ISOQoL Webinar tomorrow "Communicating the Patient Voice with PROs" with great colleagues and Solomon Alexis, who is a wonderful patient representative adding his view and really brining the topic of PRO objectives and PRO estimands alive. Lysbeth Floden Jessica Roydhouse Antoine Regnault https://lnkd.in/e9pGxQ6V

In all aspects of the scientific and research community, diversity makes a crucial difference. Diversity among researchers leads to asking diverse questions, facilitating specialization, invigorating problem solving, and balancing biases (https://lnkd.in/epnjmcJd). Diversity among research participants is just as crucial, it is vital that clinical research include people representing a diversity of “lived experiences and living conditions, as well as characteristics like race and ethnicity, age, sex, and sexual orientation, so that all communities can benefit from scientific advances” (https://lnkd.in/gdrbETsV). Adelphi Values is committed to fostering diversity in the scientific community. On the 21st of May, we celebrate the World Day for Cultural Diversity for Dialogue and Development. Established by the United Nations in 2002, this is a day to highlight “not only the richness of the world’s cultures, but also the essential role of intercultural dialogue for achieving peace and sustainable development” (https://lnkd.in/ejrfxPUV). Image source: https://lnkd.in/eVrZ5gym

LGBTQIA+ populations are often underrepresented and marginalized in clinical research, including in the patient-centered outcomes field. As such, Adelphi Values is committed to confronting bias against LGBTQIA+ individuals and to conducting research that is diverse and inclusive of LGBTQIA+ populations. On May 17, we recognize the International Day Against Homophobia, Biphobia, and Transphobia. Established in 2004, this day aims “to draw attention to the violence and discrimination experienced by lesbian, gay, bisexual, trans, intersex people, and all of those with diverse sexual orientations, gender identities or expressions, and sex characteristics” (source: https://may17.org/about/). The theme this year’s campaign is “No one left behind: Equality, freedom, and justice for all”. #IDAHOBIT #IDAHOBIT2024 Sources and further reading: -L Lawrence, “Nothing for Us Without Us: Building Inclusive Clinical Trials for the LGBTQIA+ Community.” https://lnkd.in/eCgjk58v -L McNair, “Making Clinical Research Inclusive: Strategies to Include the LGBTQIA+ Community in Research Trials.” https://lnkd.in/evrMUMgj -May17.org, “International Day Against Homophobia, Transphobia & Biphobia.” https://may17.org/ -S Wratten, C Finbow, S Hatton, AM Jones, J Wells, A Young, “Everyone Should be Invited to the PROM: Diversifying Patient Reported Outcome Measures for LGBTQ+ Inclusion.” Value in Health, 25(1):S236. https://lnkd.in/ewMA2W6g -