Bedside rationing in cancer care: Patient advocate perspective

Rationing in healthcare remains very much a taboo topic. Before COVID-19, it rarely received public attention, even when it occurred in everyday practices, mainly in the form of implicit rationing, as it continues to do today. There are different definitions, types and levels of healthcare rationing, according to different perspectives. With the aim of contributing to a more coherent debate on such a highly emotional healthcare issue as rationing, here are provided a number of reflections from a patient advocate perspective which are specifically focused on bedside rationing, the most troublesome level, both for patients and clinicians, particularly in regard to cancer care. Oncology, with its numerous expensive therapies and increasing number of patients, is undeniably one of the main areas contributing to the increase in healthcare costs. However, the fixed budgets of today's publicly financed health systems cannot allow unlimited access to the potentially beneficial treatments to all patients. Bedside rationing constitutes the last phase of many decision-making processes occurring at different interrelated levels (macro-levels), both inside and outside healthcare systems, which implicitly and inevitably result in a bottleneck determined by the upstream decisions themselves. Shifting from implicit to explicit bedside rationing essentially means moving from a paternalistic to a citizen-before-patient approach; this implies, first of all, a cultural change. Practical bedside rationing is an ethically complex topic, but one that needs to be urgently addressed in a transparent and open debate. In this scenario, the oncological community – patients, patient advocates and clinicians – can and should play an important role.

Patient Views Around Their Hernia Surgery: A Worldwide Online Survey Promoted Through Social Media

Introduction: Hernias are one of the most common surgical diagnoses, and general surgical operations are performed. The involvement of patients in the decision making can be limited. The aim of this study was to explore the perspectives of patients around their hernia and its management, to aid future planning of hernia services to maximise patient experience, and good outcomes for the patient.Methods: A SurveyMonkey questionnaire was developed by patient advocates with some advice from surgeons. It was promoted on Twitter and Facebook, such as all found “hernia help” groups on these platforms over a 6-week period during the summer of 2020. Demographics, the reasons for seeking a hernia repair, decision making around the choice of surgeon, hospital, mesh type, pre-habilitation, complications, and participation in a hernia registry were collected.Results: In total, 397 questionnaires were completed in the study period. The majority of cases were from English speaking countries. There was a strong request for hernia specialists to perform the surgery, to have detailed knowledge about all aspects of hernia disease and its management, such as no operation and non-mesh options. Chronic pain was the most feared complication. The desire for knowledge about the effect of the hernia and surgery on the sexual function in all age groups was a notable finding. Pre-habilitation and a hernia registry participation were well-supported.Conclusions: Hernia repair is a quality of life surgery. Whether awaiting surgery or having had surgery with a good or bad outcome, patients want information about their condition and treatment, such as the effect on aspects of life, such as sex, and they wish greater involvement in their management decisions. Patients want their surgery by surgeons who can also manage complications of such surgery or recommend further treatment. A large group of “hernia surgery injured” patients feel abandoned by their general surgeon when complications ensue.

Perspectives, Expectations, and Concerns of European Patient Advocates on Advanced Therapy Medicinal Products

This paper presents the results of a qualitative study based on semi-structured interviews of 10 expert patient advocates on several different issues around Advanced Therapy Medicinal Products (ATMPs). The interviews were conducted between February and May 2020 based on a guideline with a list of 8 topics that covered concerns about safety and ethics, access problems and limitations, pricing of ATMPs and educational needs for patient communities. Overall, the interviewees expressed a high degree of convergence of opinions on most of the topics and especially on the identification of the reasons for concern. Conversely, when asked about possible solutions, quite a wide range of solutions were proposed, although with many common points. However, it highlights that the debate is still in its infancy and that there are not yet consolidated positions across the whole community. A general concern emerging from all the interviews is the potential limitation of access to approved ATMPs, both due to the high prices and to the geographical concentration of treatment centers. However, patients recognize the value of a model with a limited number of specialized clinical centers administering these therapies. On the ethical side, patients do not show particular concern as long as ATMPs and the underlying technology is used to treat severe diseases. Finally, patients are asking for both more education on ATMPs as well as for a more continuous involvement of patient representatives in the whole “life-cycle” of a new ATMP, from the development phase to the authorization, from the definition of the reimbursement scheme to the collection of Real Word Data on safety and long-term efficacy of the treatment.

Characterizing and Exploiting Tumor Microenvironments to Optimize Treatment Outcomes

Our understanding of cancer initiation, progression, and treatment is continually progressing through dedicated research achieved through laboratory investigation, clinical trials, and patient engagement. The importance and complexity of the microenvironment and its role in tumor development and behavior is pivotal to the understanding of tumor growth and the best course of treatment. The 57th Irish Association for Cancer Research (IACR) Annual Conference collected key researchers, clinicians, and patient advocates together to highlight and discuss the recognized importance of the microenvironment and treatment advances in cancer. In this article, we describe the key components of the microenvironment that influence tumor development and treatment, including the microbiome, metabolism, and immune response and the progress of preclinical models to reflect these complex environments. From a psycho-social oncology perspective, we highlight expert opinion and data on the process of shared decision-making in the context of emerging cancer treatments.

System-Level Barriers to Uptake of Existing and Novel Radioimmunotherapy for People with Lymphoma

Introduction: Radioimmunotherapy is a targeted approach to cancer care. It has been shown to improve progression-free survival and quality of life in people with specific types of non-Hodgkin's lymphoma, including CD20- and CD37-positive B-cell lymphoma (Barr et al., 2018 NCT00770224; Green & Press, 2017; Kolstad et al., 2018 NCT01796171; Witzig et al., 2002). It has also been shown to increase the proportion of people who achieve complete response to therapy (Green & Press, 2017). Although CD20-targeted therapy has been approved in the US and Europe for nearly two decades, its use remains limited. At its peak in the UK in 2007, only 57 people with lymphoma were treated with the therapy (Rojas et al., 2019). However, research is ongoing; a PubMed search for 'radioimmunotherapy' and 'lymphoma' produces 1,097 articles in the past 20 years, including over 300 articles in the past ten years. With novel applications (CD37- and CD22-targeted) currently under investigation, it is increasingly important to understand potential system and policy barriers to uptake, such that existing roadblocks are overcome. Tackling these challenges is essential to ensuring that radioimmunotherapy is appropriately integrated into relevant clinical guidelines and care pathways. Aim: To better understand the policy and system barriers to integration of existing and novel radioimmunotherapy into lymphoma care in the US and the UK. Methodology: We conducted a structured literature review, taking a systems approach, to explore each of the five domains of the health system as outlined in the Radioligand Therapy Readiness Assessment Framework (Figure 1. Five core domains of the health system, with subdomains; The Health Policy Partnership, 2021). This approach allowed us to gain a holistic understanding of what integration of radioimmunotherapy involves and identify potential barriers, from clinical development through to patient care. We also conducted semi-structured interviews with lymphoma experts in the US (N=5) and UK (N=6), including clinicians and nurses ('clinical experts', N=8) and patient advocates ('advocates', N=3). Our work was guided by national expert advisory groups in each country. Results: While the US and UK health systems are organized and funded very differently, the literature and expert interviews revealed many common strategic challenges to the integration of radioimmunotherapy. These were: 1) low awareness and understanding of radioimmunotherapy among newly licensed healthcare professionals (an issue raised by n=8 clinical experts); 2) limited awareness by patient advocates, patients and policymakers (n=3 advocates); 3) caution around uptake of new radioimmunotherapy agents based on limited access to and use of older treatments (n=7 clinical experts); 4) nonexistent referral pathways and unclear models of working which discourage shared care and hinder multidisciplinary coordination (n=4 clinical experts); 5) lack of recent clinical data and research to support evidence-based use (n=5 clinical experts); 6) reimbursement concerns (n=5 clinical experts). Policy implications: Taking a systems approach to explore potential barriers to integration of radioimmunotherapy has allowed us to explore potential adaptations needed to achieve multisectoral and multidisciplinary working. Our findings reveal that professional societies, policymakers and patient advocacy groups will need to work together to overcome these barriers by: 1) reaching consensus on timing and eligibility criteria for use of radioimmunotherapy; 2) creating accurate and consistent patient-friendly information; 3) efficiently updating clinical training and treatment guidelines to include approved radioimmunotherapy; 4) developing evidence-based and personalized referral and treatment pathways which ensure consistency of care; and 5) investing in data collection and analysis to continually inform practice. Figure 1 Figure 1. Disclosures Morgan: Nordic Nanovector: Consultancy; Advanced Accelerator Applications: Consultancy. Merkel: Advanced Accelerator Applications: Consultancy; Amgen: Consultancy; AstraZeneca: Consultancy; Bayer: Consultancy; Bristol-Myers Squibb: Consultancy; Curium: Consultancy; Johnson & Johnson: Consultancy; MSD: Consultancy; Nordic Nanovector: Consultancy; Novartis: Consultancy. Gordon: Zylem Biosciences: Patents & Royalties: Patents, No royalties; Bristol Myers Squibb: Honoraria, Research Funding. Buscombe: Advanced Accelerator Applications Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau. Wait: Bayer: Consultancy; Curium: Consultancy; Johnson & Johnson: Consultancy; MSD: Consultancy; Advanced Accelerator Applications: Consultancy; Nordic Nanovector: Consultancy; Shionogi: Consultancy; Bristol-Myers Squibb: Consultancy; Amgen: Consultancy; AstraZeneca: Consultancy. Dreyling: Genmab: Consultancy; Celgene: Consultancy, Research Funding, Speakers Bureau; Amgen: Speakers Bureau; Astra Zeneca: Consultancy, Speakers Bureau; Bayer HealthCare Pharmaceuticals: Consultancy, Research Funding, Speakers Bureau; BeiGene: Consultancy; Gilead/Kite: Consultancy, Research Funding, Speakers Bureau; Incyte: Consultancy, Speakers Bureau; Janssen: Consultancy, Research Funding, Speakers Bureau; Novartis: Consultancy, Speakers Bureau; Roche: Consultancy, Research Funding, Speakers Bureau; Abbvie: Research Funding. Mittra: Advanced Accelerator Applications Novartis: Consultancy, Honoraria, Research Funding; Curium: Consultancy, Honoraria; Nordic Nanovector: Research Funding. Gopal: Janssen: Consultancy, Honoraria, Research Funding; Cellectar: Consultancy, Honoraria; Bristol Meyers Squibb: Research Funding; SeaGen: Consultancy, Honoraria, Research Funding; I-Mab bio: Consultancy, Honoraria, Research Funding; Incyte: Honoraria; MorphoSys: Honoraria; Servier: Consultancy, Honoraria; Genetech: Consultancy, Honoraria, Research Funding; IGM Biosciences: Research Funding; Astra-Zeneca: Research Funding; Karyopharm: Consultancy, Honoraria; Takeda: Research Funding; Teva: Research Funding; Agios: Research Funding; Kite: Consultancy, Honoraria; ADC Therapeutics: Consultancy, Honoraria; Acrotech: Consultancy, Honoraria; Merck: Consultancy, Honoraria, Research Funding; Epizyme: Consultancy, Honoraria; Nurix Inc: Consultancy, Honoraria; Beigene: Consultancy, Honoraria; Gilead: Consultancy, Honoraria, Research Funding.

How do National Health Service (NHS) organisations respond to patient concerns? A qualitative interview study of the Patient Advice and Liaison Service (PALS)

ObjectivesTo describe the current work of the Patient Advice and Liaison Service (PALS) and assess the service’s potential to resolve concerns and contribute to organisational learning.DesignA qualitative study using semistructured interviews.SettingFour mental health trusts and four acute trusts in the English National Health Service, a total of eight PALS across different trusts.ParticipantsTwenty-four participants comprising of PALS staff and clinicians working with PALS teams.MethodsSemistructured interviews were undertaken with participants using video conferencing software. The framework method was used for the analysis of the large qualitative dataset, which is a conventional method of analysis, similar to thematic or qualitative content analysis.ResultsPALS teams fulfil their core responsibilities by acting as point of contact for patients, providing information and resolving a variety of recurrent problems, including PALS staff communication, staff attitudes and waiting times. The remit and responsibilities of each PALS has often broadened over time. Barriers to resolving concerns included a lack of awareness of PALS, limited to no policies informing how staff resolve concerns, an emphasis on complaints and the attitude of clinical staff. Senior management had widely differing views on how the PALS should operate and the management of complaints is a much higher priority. Few PALS teams carried out any analysis of the data or shared data within their organisations.ConclusionsPALS teams fulfil their core responsibilities by acting as point of contact for patients, providing information and resolving concerns. PALS staff also act as navigators of services, mediators between families and staff and, occasionally, patient advocates in supporting them to raise concerns. PALS has the potential to reduce complaints, increase patient satisfaction and provide rapid organisational feedback. Achieving this potential will require more awareness and support within organisations together with updated national policy guidance.

Hope-enhancement workshops in the SWOG Cancer Research Network: Feasibility of an online intervention.

210 Background: Research shows that healthcare professionals’ personal hopefulness is associated with burnout and life satisfaction, highlighting the value of hope-enhancement interventions. Feldman and Dreher developed a single-session hope intervention, but this has been used rarely with oncology professionals, and only in in-person format (Shah, Ferguson, Corn et al.). Given SWOG Cancer Research Network’s commitment to assessing hope-enhancement approaches and the need for online interventions given COVID-19, we report a feasibility study of a virtual hope workshop in SWOG members. Methods: The workshop was a single 2-hour session delivered live via Zoom to 6-8 participants at a time. The workshop comprises 3 components: A brief lecture on hope and two exercises—a “hope mapping” exercise (aided by a smartphone app created for the workshop) and a hope visualization exercise—both designed to build hope for a life goal of each participant’s choosing. 29 SWOG members participated. A link to post-workshop measures was sent to participants, which they were given a week to complete. Measures included Thanarajasingamet al’s 5-item Was-it-Worth-it (WIWI) measure; Kirkpatrick’s 4-item Training Evaluation Model (TEM; reaction, learning, behavior, results); and an item assessing the degree to which participants believe concepts from the workshop should be integrated into SWOG studies. Results: In all, 25 participants (86%) completed measures. Participants were physicians (n = 8), nurses (n = 4), patient advocates (n = 3), research staff (n = 3), and others (n = 7); mostly female (n = 17), mostly white (n = 18), with a mean age of 55.5 (SD = 13.95). Results for the WIWI items are as follows: “Was it worthwhile to participate in the Hope Workshop?” (23 Yes, 2 No/Undecided/Missing Answer); “If you had to do over, would you participate in the Hope Workshop again?” (22 Yes, 3 No/Undecided/Missing Answer); “Would you recommend participating in the Hope Workshop to others?” (22 Yes, 3 No/Undecided/Missing Answer). Two additional items on the WIWI asked participants to rate on a 3-point scale the degree to which they believe their quality of life had increased due to the workshop (M = 2.52, SD =.51) and their overall experience in the workshop (M = 2.70, SD =.64). Ratings for Kirkpatrick’s TEM items likewise were high, ranging from 6.91 (SD = 1.31) to 7.70 (SD =.70) on an 8-point scale. Finally, participants gave a mean rating of 4.44 (SD =.59) on a 5-point scale to the item “To what degree do you believe it may be useful to integrate concepts from this workshop into SWOG trials/studies?” Conclusions: It is feasible to implement hope-enhancement workshops in an online platform that includes a smartphone app. Data obtained from two validated tools (WIWI instrument and Kirkpatrick’s TEM) attest to an array of positive outcomes. Participants also overwhelmingly advocated integrating hope concepts into SWOG’s research.

The benefits and burdens of patient advocacy.

204 Background: Patient advocates share their time and experience to improve cancer research, care, and support. Advocacy can be rewarding and empowering, and survivors and caregivers express a variety of reasons for engaging in advocacy. Yet, advocacy can also come with mental and emotional costs. Challenges include the grief of losing friends to cancer, the related “survivors’ guilt”, and the burden of repeatedly reliving their experience. The National Coalition for Cancer Survivorship (NCCS) conducted a survey to better understand the experience of patient advocates, and actions that organizations can take to recognize and support advocates. Methods: NCCS convened two focus groups with 10 advocates (the “working group”) to understand factors that contribute to advocates feeling rewarded or burned out from advocacy. We reviewed the transcripts to identify themes and reviewed the literature. We developed a survey and included a validated, non-proprietary, single-item burnout measure used for health care professionals. We built the survey online and tested with select working group members. We disseminated the survey to NCCS’ advocacy network, and working group members shared with their networks. Results: As of June 1, we received 176 responses, with the survey will open for another week. The initial data show that the vast majority of respondents find their advocacy work rewarding (97%), empowering (93%), and a positive impact on their lives (96%). At the same time, 29.5% of respondents indicated they have symptoms of burnout, including emotional and physical exhaustion. Respondents report that their advocacy work results in exhaustion (50.7%), sadness (41.1%), and anxiousness (28.7%). More than a third (36.7%) said that grief makes it hard to maintain their work as advocates. A majority manage the demands of their advocacy work by practicing self-care (66.6%) and using coping strategies (62.5%). Advocates shared the specific practices and strategies they used. Less than half (42.5%) said they set boundaries between their advocacy work and their personal life. The final analysis of the survey data will be complete by the end of June 2021. Conclusions: The phrase, “Nothing about us, without us,” has guided the inclusion of patient and caregiver voices in the design of research, care delivery, research grant review, quality measurement, and other aspects of cancer care and cancer research. Yet organizations that ask for the mental and emotional labor of advocates, including patient organizations, researchers, health care professionals, government institutions, and pharmaceutical companies, should understand the costs to advocates and how to best support them. As one respondent said, “Perhaps organizations could set the stage for this work by openly validating the toll that cancer itself takes, and acknowledge that advocacy takes energy and commitment, which may not always be possible to sustain in the face of ongoing treatment or other life complications.”

Bridging the Gap: Development of a Patient Public Involvement Group

Aims Every year, the Queen Elizabeth Hospital Birmingham (QEHB) neuro-oncology team review over 2000 individuals with brain tumour. Patient and public involvement (PPI) has been fragmented to date. Initially we invited two patient advocates and a core group of allied health professionals to meet virtually to discuss development of a local PPI group, its aims, specific goals, and timescales to maintain momentum. In March 2021 we launched “BERTI: Brain tumour Education and Research paTient and public Involvement group, West Midlands”. Our inaugural meeting will be virtual in April 2021 and will be followed by three meetings per year. Method We developed information leaflets to promote the BERTI initiative. A membership form has been developed to record baseline information (non-clinical) e.g. contact details, which tumour type the individual is interested in, which aspect of BERTI they are interested in (Education, Research or Clinical service development). Patient advocates have reviewed all patient and public facing forms. All forms have been checked by Information Governance at QEHB to ensure General Data Protection Regulation compliant. Contact details and non-clinical data will be stored in a password protected database on a NHS computer network. Information to ensure members can unsubscribe from this group is easy to find and will be done immediately. A BERTI email account has been set up with a core group of professionals having access who are all fully trained in data protection and have GDPR certification. We will produce an annual BERTI newsletter. Results BERTI is a group for people affected by brain tumours in any way. We include patients, friends and family, health professionals and researchers who are committed to improving the care of people with a brain tumour. It is run between the QEHB and University of Birmingham (UoB). BERTI provides a forum to meet other people affected by brain tumours and - Share experiences; - Understand the condition better; - Work with clinical staff and researchers to improve clinical care and facilitate research for people living with brain tumours. We will meet three times per year, virtually at the moment but face to face once Covid restrictions ease. We will have a formal talks explaining certain aspects of brain tumour or research initiatives. Throughout, there will be dedicated time set aside for group discussions to promote a genuine two-way dialogue between health-care/research professionals and individuals affected by brain tumour. Conclusion The PPI group will be allowed to evolve rather than start out too prescriptive. It will capitalise on its strengths and skills of its composite members. There are no set models rather principles that will provide the foundations for a group which is supported to fulfil their specific purpose. The views of the PPI group will be presented at the quarterly Neuro-Oncology Multi-disciplinary team business meetings to provide a forum to discuss issues. We aim to foster a PPI friendly environment, deliver real engagement and involvement across the group.