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S. Shilo

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    MS 27 - Engaging Patients in Research: Best Practices (ID 549)

    • Event: WCLC 2017
    • Type: Mini Symposium
    • Track: Patient Advocacy
    • Presentations: 5
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      MS 27.01 - The Multi-Centre Clinical Trials Network (MCTN): Matching Lung Cancer Patients to Trials in Australia (ID 7769)

      14:30 - 16:15  |  Presenting Author(s): Nick Pavlakis

      • Abstract
      • Presentation
      • Slides

      Abstract not provided

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      MS 27.02 - LungMATCH: Developing a Patient-Friendly, Personalized Education and Navigation Program to Increase Participation in Clinical Research (ID 7770)

      14:30 - 16:15  |  Presenting Author(s): Jennifer C King

      • Abstract
      • Presentation
      • Slides

      Abstract:
      It is widely recognized that patient participation in clinical research is a significant challenge, with only less than 5% of adult patients with cancer entering on clinical trials. This issue is becoming exacerbated in the field of lung cancer. With the advent of new therapeutic options and strategies accompanied by endless potential combinations of these approaches, there are more important trials and research studies that need to be done than patients available to participate in them. To address this problem, Lung Cancer Alliance developed a unique, innovative program known as LungMATCH that combines direct patient services with increasing enrollment to clinical studies. LungMATCH provides patient education and navigation through the changing treatment landscape in lung cancer while informing and educating patients about research opportunities that they can discuss with their treatment team. There are multiple programs under the LungMATCH umbrella. These include a molecular testing service where patients can initiate the process of molecular testing themselves, a novel patient-friendly online clinical trial matching widget, and phone-based personalized treatment and trial specialists who are knowledgeable about the state of lung cancer today and the many clinical trials available. These specialists can empower a patient or caregiver to have an informed conversation with their treatment team. Notably, while providing the community with much-needed navigation services, the program also aims to accelerate research discoveries through patient enrollment on a registry protocol for the molecular testing component and increasing patient accrual to clinical trials. In the first six months since launch, there have been barriers to overcome and lessons learned but many successes. Over 50 patients have been referred to the molecular testing program. More than 10 times as many users are viewing clinical trial search results compared to a previous clinical trial matching tool. Patients who speak with the trial navigators report having conversations about clinical trials with their healthcare providers much more frequently than other callers. These initial data indicate that the program is filling a need in our community and can help provide support to patients and caregivers while accelerating lung cancer research.

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      MS 27.03 - Lung Cancer Registry: Using Patient Data to Improve Outcomes and Quality of Life (ID 7771)

      14:30 - 16:15  |  Presenting Author(s): S.W. Young

      • Abstract
      • Presentation
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      Abstract:
      Background: Decision makers in research, industry, policy and health-care settings are actively seeking robust sources of patient data to inform their practices. Patient registries are ideally positioned to capitalize on this growing interest by building high-impact source of patient information. Registries give patients a direct means to participate in the care continuum, leveraging their input and insights to focus priorities and improve outcomes. Definition: Patient registries are organized systems designed to directly involve patients in the collection of their disease data and engage the medical community in the analysis and use of this data to improve lung cancer patient care. By creating a centralized registry of robust, on-going data to which patients, health-care professionals, researchers, industry, and policy makers have open access, registries provide data-driven, longitudinal information to: • support and facilitate improved disease management and standard of care; • assess individual patients to help determine the best line(s) of treatment; • measure patient outcomes to assess the quality and efficacy of health care provided; • use aggregate data as a tool to find patterns (for example, by ethnicity, geographic location, sex, age, stage of diagnosis, treatment protocols, health care facility/clinic, etc.) that could better predict the medical future and lead to improved outcomes and quality of life for patients, both individually and as a group, over time. • eventually allow us to evaluate the clinical and cost effectiveness of different diagnostic tools, treatments, and services. Current Landscape: Launched in 2012, The Registry of Patient Registries run by the Agency for Healthcare Research and Quality[1] currently list over 3,100 registries on its site covering a wide variety of registry types, but with most being research or institution generated. According to the National Institutes of Health, “Registries can be used to recruit patients for clinical trials to learn about a particular disease or condition; to develop therapeutics or to learn about population behavior patterns and their association with disease development; developing research hypotheses; or for improving and monitoring the quality of health care.”[2] In more recent times we have seen a rise in the development of Patient Powered Registries which “are somewhat indistinguishable from traditional registries, with one exception: In patient-powered patient registries, patients and family members “power” the registry by managing or controlling the collection of the data, the research agenda for the data, and/or the translation and dissemination of the research from the data.[3] Like researcher-generated patient registries, there is no single complete listing or documented number of PPRs in the United States however one study of 201 disease advocacy organizations found that forty-five percent had supported a research registry or biobank.[4] With the definition, purpose and current landscape being covered, we can now look at how registries continue to evolve both to meet the most common concerns and to greatly impact a patient’s care and quality of life. Multiple data sources: By leveraging the power of digital technology many patient registries now supplement patient reported data with clinical data through integration with Electronic Heath Record (EHR) systems. This integration allows for the capture of additional data points and to verify patient reported data, specifically when the patient may be unsure of the answer. In addition, natural language processing now provides the capability to “pull” information from uploaded documents and reports such as CT scans, lab reports, x-rays, genomic tests. Having multiple data sources allows researchers to paint a more detailed picture of the patients within the registry and more accurately identify patterns and eventually interventions. Clinical trial matching functionality: As with the integration of EHR, digital technology is now facilitating clinical trial matching functionality directly into patient registries. This service now allows patients, based on the information provided to not only receive a list of potential matches, but even allows for direct communication to the investigators involved in the study. Building patient communities: Unlike research or institution generated studies, patient powered registries may serve as a tool for building connected patient communities particularly when matched with general social media platforms such as Facebook and LinkedIn or more specific patient communities such as Patients Like Me and Inspire. Because patient registries now ask participants to consent not only to sharing their data, but to be contacted by the provider, registries can quickly bring together patients from across the globe for a variety of purposes, including driving research into their specific disease. This is particularly important in lung cancer which we now know is not one disease, but a series of “rare diseases” based on genetic differentiation. Educating patients: Being able to communicate directly with patients not only helps facilitate the building of communities and clinical trial matching, it also allows the registry provider to disseminate customized, personalized education materials directly to the participant. Multiple studies have shown how access to such information improves not only quality of life, but satisfaction with care. Conclusion: Well-designed patient registries are based on the idea that to improve outcomes and quality of life, no silos within the care community should exist, collaboration is critical, and there must be open and shared access to all information. In addition, today’s registries should leverage technology to allow for multiple data sources, longitudinal data collection, two-way communication and clinical trial matching to better serve its participants. By putting these tools to work and providing accurate, digestible information in the hands of industry, health IT companies, physicians and other health care practitioners, registries will organize and engage the entire lung cancer community around the common goal of better care for patients. 1. 4. Landy D, Brinich M, Colten M, et al. How disease advocacy organizations participate in clinical research: A survey of genetic organizations. Genetics in Medicine. 2012;14(2):223–8.

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      MS 27.04 - Approaches to Patient-Centric Clinical Trials: Sharing Challenges and Lessons Learned (ID 7772)

      14:30 - 16:15  |  Presenting Author(s): Ingeborg Beunders

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      Abstract:
      INTRODUCTION: Patient-centricity means much more than episodic patient involvement in health care. A Patient-centric culture requires that patients play an active role in all health care subareas from identifying unmet needs, pre-clinical research, clinical research, drug authorization, drug reimbursement to drug prescription. This study focus on patient-centricity in clinical trials. While in former days a patient participating in a clinical trial very often felt like a “laboratory mouse” only being instructed what to do and often without any understandable information nowadays those responsible for research and drug development discover the advantages of patient involvement such as better recruitment, patient friendly protocols, a better retention rate etc. Till now the main focus was effectiveness and safety of drugs to be shown by cost-intensive clinical trials. Nowadays value of treatments and relevance of outcomes to patients are of special interest. Patient Advocacy organizations help with recruitment by informing their members about new clinical trials. Crowdsourcing techniques addressing different communities like medical experts, patients and researchers are used to provide responses to survey questions. Apart from the arising enthusiasm about the doubtlessly potential opportunities the necessary requirements and their costs such as patient education costs, efforts to establish long-term partnership with patient advocacy groups, implementing patient advisory boards, legal framework conditions which protect patients but do not hinder their active participation as stakeholders etc. should not be underestimated. Additionally, pharmaceutical companies need to implement patient-centricity as a strategy across their functional departments. Successful patient-centric clinical trials require the willingness of patients especially of those who experienced clinical trials to provide their input in order to support improvement. METHOD: An anonymous survey has been designed and submitted to patients who already participated in a clinical trial. As patient-centricity in clinical trials is not just a lung cancer but a general issue Patient Advocacy Groups for different diseases such as lung cancer, breast cancer, cancer in general, lung fibrosis, arthritis, HIV etc. have been involved in US and Europe and further countries aiming to learn more about patient experience in clinical trials. As there is an increasing number of industry-funded clinical trials[1] another online survey was submitted to pharmaceutical companies in order to to find out more about the daily practice. RESULTS: 40 of 61 participants who already have been on a clinical trial completed the survey. Almost 50% recently (2016 or 2017) participated in a clinical trial. 16 patients live in US, followed by 8 patients from Austria and single patients from different European countries, one from Australia and one from Israel. Almost 40% of the surveyed have not been asked for feedback concerning the procedure during or after participation in the trial. 87% of patients would take part again in a clinical trial due to reasons like getting effective treatment, new treatment, helping others etc. Previous studies have found that trial participants do not receive the trial results.[2 ]This study replicated this finding. Almost 50% have not been informed about the final trial results although the WMA Declaration of Helsinki 2013 requested that all medical research subjects should be given the option of being informed about the general outcome and results of the study.[3] There is a high rate of willingness (82%) to provide input from patient perspective to improve the design of clinical trials. The analysis of the survey did not show any relevant differences concerning geographic area. 7 research-based pharmaceutical companies completed the second survey. Asking in which parts of the trial process (clinical question, clinical trial design, patient recruitment, trial management) patients are actively involved two companies indicated that patients are not involved in any of the mentioned parts. About 70% of the surveyed request feedback from patients about the procedure of clinical trials (30% do not). 3 of 7 companies do not see any hurdles for driving forward patient-centricity, 3 companies mentioned hurdles like e.g. substantial differences in the patients´ attitudes / concerns / current management across different countries/regions, added complexity, clarity on compliance rules, contractual framework and often patient report disease impact is difficult to quantify (e.g. I´m feeling tired). The most important measures in the pharmaceutical companies are understanding of patient needs, inclusion of patient reported outcomes, patient satisfaction, safety of IMP (investigational medical product) and patient selection biomarkers. The 2 companies who do not actively involve patients in the different parts of the trial process mentioned patient selection biomarkers, safety of IMP, safeguarding of patient’s rights, data quality and integrity as important measures. Both did not see any hurdles to drive forward patient-centricity in clinical trials. CONCLUSION: Although the number of participants in both surveys is quite low, the informational results gained by the patient survey can shed some light to the patient experience concerning clinical trials, the willingness as well as the reasons to participate more than once in a clinical trial. “Effective treatment” as most frequently mentioned reason to participate in a trial indicates a lack of information about clinical trials. There is a vast majority of patients with clinical trial experience being willed to provide their input in order to improve the design of new clinical trials. On the other hand there are researching companies who do not involve patients/patient advocates in the clinical trial process at all and the results of the survey provides an indication of the inconsistent proceedings within the pharmaceutical industry. In order to increase patient-centricity in clinical trials it is necessary that all relevant stakeholders (patients, patient advocates, regulators, medical experts, pharmaceutical companies etc.) compile consensual guidelines that ensure inclusion of relevant and adequately validated PRO, accurate patient information about clinical trials (in different languages), the option to be informed about the trial results for trial participants, information and education about clinical trials and collection and usage of patient feedback. [1]Ehrhardt S, Lawrence J. Trends in National Institutes of Health Funding for Clinical Trials Registered in ClinicalTrials.gov. JAMA. 2015;314(23):2566-2567 [2 ]Partridge AH, Winer EP. Informing clinical trial participants about study results. JAMA. 2002;288(3):363-365 [3]https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ (August 2[nd], 2017)

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      MS 27.05 - Screening Veterans: Opportunity and Challenge (ID 7773)

      14:30 - 16:15  |  Presenting Author(s): Chris Draft

      • Abstract
      • Presentation

      Abstract not provided

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