Innovative Patient Involvement During Covid-19: Keeping Patients at the Heart of HTA

The COVID-19 pandemic and lockdown measures in the United Kingdom resulted in significant challenges and created opportunities for innovation to keep patients at the heart of HTA. The introduction of the Coronavirus Act 2020 and the associated public health guidance meant that NICE's conventional HTA methods were no longer feasible. NICE introduced rapid, innovative updates to patient and public involvement (PPI), decision-making meetings, and consultations to harness the expertise of patients and the public to ensure guidance addressed the expected concerns and identified barriers which could impact access. This article describes the PPI support for NICE's rapid shift to virtual meetings and virtual engagement. We utilize the authors' experience and patient and public contributor feedback to understand the experience of participating in a virtual setting and identify four themes: accessibility; inclusivity; transparency; and intrapersonal relationships and committee dynamics. The article also considers how patient representatives participated in, and facilitated, the development of guidance for a hypothetical technology to keep patients and the public at the heart of expedited and novel HTA processes to identify and understand the expected patient concerns and potential barriers for when a technology would be introduced.

A framework for action to improve patient and public involvement in health technology assessment

Background Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for “social participation.” This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA. Methods This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework. Results According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies. Conclusions Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.

Participatory Research: A Priority Setting Partnership for Chronic Musculoskeletal Pain in Denmark

Background Patient and stakeholder engagements in research have increasingly gained attention in healthcare and healthcare-related research. A common and rigorous approach to establish research priorities based on input from people and stakeholders is the James Lind Alliance Priority Setting Partnership (JLA-PSP). The aim of this study was to establish research priorities for chronic musculoskeletal (MSK) pain by engaging with humans living with chronic MSK pain, relatives to humans living with chronic MSK pain, healthcare professionals (HCP), and researchers working with chronic MSK pain. Methods This JLA-PSP included a nation-wide survey in Denmark, an interim prioritisation, and an online consensus building workshop. The information gained from this was the basis for developing the final list of specific research priorities within chronic MSK pain. Results In the initial survey, 1010 respondents (91% people living with chronic MSK pain/relatives, 9% HCPs/researchers) submitted 3121 potential questions. These were summarised into 19 main themes and 36 sub-themes. In the interim prioritisation exercise, 51% people living with pain/relatives and 49% HCPs/researchers reduced the list to 33 research questions prior to the final priority setting workshop. 23 participants attended the online workshop (12 people/relatives, 10 HCPs, and 1 researcher) who reached consensus for the most important research priorities after two rounds of discussion of each question. Conclusion This study identified several specific research questions generated by people living with chronic MSK pain, relatives, HCPs, and researchers. The stakeholders proposed prioritization of the healthcare system's ability to support patients, focus on developing coherent pathways between sectors and education for both patients and HCP. These research questions can form the basis for future studies, funders, and be used to align research with end-users priorities Keywords Chronic musculoskeletal pain, patient and public involvement, research priorities

Involving and engaging pregnant women in maternity-related research: reflections on an innovative approach

Background Meaningful public involvement in maternity research remains challenging, partly due to the transient nature of pregnancy. This paper reflects on the development, implementation and simple evaluation of an innovative and inclusive approach to engaging and involving pregnant and early postnatal women in research. Methods Between January and February 2018, a Research Fellow in Maternity Care, a Professor of Evidence Based Maternity Care, and a Patient and Public Involvement Lead convened for a number of meetings to discuss how public involvement and engagement might be improved for pregnancy-related research. A stakeholder group was created, including a local community matron, a community engagement officer at a local children’s centre, public contributors, and senior members of the Maternal and Child Health theme of the West Midlands Collaboration for Leadership in Applied Health Research and Care (CLAHRC WM). The team worked together to develop a format for Yoga for Bump sessions: a free 90-min session, offered weekly, which included research involvement/engagement, pregnancy yoga, and a ‘question and answer’ session with a midwife. Results A total of 67 women from two local communities in Birmingham attended Yoga for Bump sessions, which ran between May and December of 2018. Evaluation of the sessions suggested benefits to both women and researchers: it created mutually beneficial relationships between contributors and researchers, provided opportunities for women to engage and get involved in research that was directly relevant to them, and provided a convenient and efficient way for researchers to involve and engage pregnant women from diverse backgrounds in their research. Unintended benefits included self-reported improvements in women’s health and wellbeing. Conclusions Yoga for Bump demonstrates an innovative approach to engaging and involving pregnant and early postnatal women; combining a free exercise class with healthcare advice and opportunities to engage with and be involved in research, and demonstrating mutual benefits for those involved. This model has the potential to be replicated elsewhere to support inclusive public involvement in pregnancy-related research. Further work is needed to design and evaluate similar approaches to involvement/engagement and explore potential funding avenues to enhance sustainability.

The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot)

Background Patient and public involvement (PPI) in research has increased steadily over the last two decades and is now both expected and appropriately resourced by many funding bodies, including the National Institute for Health Research (NIHR). However, PPI in research occurs in many different capacities and numerous frameworks exist for reporting or appraising patient involvement activities. The aim of this article is to describe processes involving PPI contributions to an NIHR-funded mixed-methods feasibility study (MoTaStim-Foot). Details of PPI advisors’ input, from initial identification and prioritisation of research ideas, to research delivery and dissemination, are discussed. Methods Extensive PPI for MoTaStim-Foot is reported, with consideration of Research Design Service (RDS) advice for PPI for research, involving identifying and prioritising: design; grant proposal development; undertaking/managing research; analysing and interpreting; dissemination; implementation; monitoring and evaluation. Two PPI workshops were undertaken; success in meeting UK standards for public involvement was audited against specific success criteria by two researchers, with discussion and consideration regarding how well our PPI achieved inclusive opportunities, working together, support and learning, governance, communications and impact. How PPI can be improved for future trials was also considered. Although the advantages of PPI for researchers were considered, the benefits for PPI advisors were also analysed. Results UK standards for public involvement were achieved, along with seven relevant research processes suggested by the RDS. PPI advisor contributions: informed study design; contributed to successful funding; enhanced trial delivery by informing participant information sheets and daily diaries; added value through undertaking note-taker roles in focus groups and helping to analyse focus group transcripts; and assisted in dissemination. However, benefits were mutual with PPI advisors reporting feeling valued and respected, a sense of pride with renewed confidence and purpose in life. Conclusions Importance and value of PPI, to researchers and patient advisors, have been highlighted, reinforcing the benefits of working in partnership with PPI advisors. Trial registration ISRCTN 13676183; Central Portfolio Management System ID 30449. Registered 02/01/2015, https://www.isrctn.com/ISRCTN13676183.

COT-29 The Japan Brain Tumor Alliance: Achievements in 2020–2021: highlights for neuro-oncologists and healthcare professionals

Brain tumors are a major shock at diagnosis for patients and their families, and the journey is hectic, impacted in various and complex ways, including acute and chronic episodes. The Japan Brain Tumor Alliance is a non-profit organisation, established in 2006 to support patients and their families. As our key activity, JBTA offers nation-wide patient support through patient-gathering meetings with and without health care professionals to openly share needs, issues and concerns, partly summarized and shared in the scientific field (Gatellier, 2021, OT Journal, vol 55 no.3, 257–259; Gatellier, 2021, MASCC Annual Meeting). JBTA actively collaborates with the International Brain Tumor Alliance, with recent outcome of an international survey featuring the brain-tumor patient and caregiver experience during COVID-19 pandemic (Voisin et al., 2020, Neuro-oncology advances, 2(1), vdaa104). As part of collaboration with healthcare professionals in 2020–21, JBTA achievements include the review of clinical guidelines (as part of Patient and Public Involvement activity), information-sharing events with the Japan Clinical Oncology Group and the seminar with a group including occupational therapists. In addition, to highlight patients’ needs and priorities to the neuro-oncology community, since March 2020, JBTA shares the Japanese translation of the monthly IBTA e-newsletter broadcasting the latest and most relevant scientific, community information and brain tumor-related events around the world to healthcare professionals and brain tumor patients and families in Japan. These enlightening events place JBTA in an ideal position to lead research in the direction most meaningful to brain tumor patients.

Individuals’ Decision to Disclose a Diagnosis of Dementia and the Development of an Online Empowerment Intervention

Learning to live with a diagnosis of dementia is a complex process. Many people affected by dementia choose not to disclose the diagnosis to others and avoid social activities due to fear of others’ adverse reactions. This in turn can limit their social participation and negatively affect their psychosocial health. A systematic review explored factors influencing the decision to disclose or conceal a dementia diagnosis to one’s social network, including individuals’ attitudes and experiences regarding this decision. The sixteen studies included reveal the complexity of this decision. Findings highlight the role of stigma and individuals’ wishes to remain ‘normal’, but also the need of explaining what has changed. Results were further discussed with people with dementia and informal caregivers as part of patient and public involvement. End users expressed their attitudes, needs, and wishes towards the design of an online empowerment intervention supporting disclosure decision-making in people affected by dementia.