scholarly journals Patient advocacy group involvement in health technology assessments: an observational study

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Ann Single ◽  
Ariana Cabrera ◽  
Simon Fifer ◽  
Jane Tsai ◽  
Jin-Young Paik ◽  
...  
Keyword(s):  
Decision Making ◽  
Online Survey ◽  
Patient Involvement ◽  
Patient Advocacy ◽  
Health Technology ◽  
Access To Medicines ◽  
Evidence Base ◽  
Lack Of Information ◽  
Local Setting ◽  
Patient Advocacy Group

Abstract Background In some jurisdictions, patients and patient groups may be invited to provide input when Health Technology Assessment (HTA) is used to inform decisions about which medicines should be subsidised or funded. This input can help frame the evidence from a patient perspective, address uncertainties in the evidence and interpret it for the local setting. However, there is currently no evidence linking patient involvement with positive reimbursement decisions. Aim We aimed to understand the expectations of patient involvement in the reimbursement process, especially among cancer patient advocacy groups (PAGs) in New Zealand (Aotearoa), South Korea and Taiwan. Methods We developed an online survey to help understand the role that cancer PAGs play in reimbursement processes and identify knowledge gaps about the processes that might impact the efforts of PAGs. The survey elicited the views of staff and patients affiliated with PAGs (n = 43) on current practices and how the assessment and reimbursement of new cancer drugs might be improved. Results There was variability in knowledge of the HTA assessment processes and in experience of being involved in them. Those with HTA experience were more likely to have confidence in the process. Those who had not been involved tended to have little awareness of, or frustration with, decision-making processes. Most identified cost, finances and economic assessments as key considerations in current processes. Some respondents had clear ideas about how their knowledge and involvement could improve processes to determine the value of new medicines. However, for many, a lack of information about the basis for decision making and opportunities to be involved was a barrier to identifying process improvement. Conclusions HTA is implemented primarily in countries seeking to have fair and equitable processes for funding medicines. PAGs often recognise the financial challenges of funding new medicines and share the desire for procedural fairness. The connection PAGs make between patient involvement and improved access to new medicines may be based on the belief they can add information to the evidence base, help solve problems, ensure fairness through transparency and/or influence the culture towards increased access to medicines they value.

Giving patients a voice in Health Technology Assessment decision-making in Greece: a patient advocacy group consensus analysis

2021 ◽  
Author(s):  
Kostas Athanasakis ◽  
Vasiliki Naoum ◽  
Eleftheria Karampli ◽  
Panagiota Naoum ◽  
Elpida Pavi ◽  
...  
Keyword(s):  
Decision Making ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Advocacy ◽  
Health Technology ◽  
Consensus Panel ◽  
Consensus Analysis ◽  
Patient Advocacy Group ◽  
Strongly Agree ◽  
Valid Information

Abstract Objective This analysis aimed to assess patient advocacy groups’ (PAGs) perspectives on patients’ and PAGs’ potential role in Health Technology Assessment (HTA) decision-making in Greece. Methods In total, 22 representatives of PAGs participated in a consensus panel meeting. Participants’ views were elicited via a consensus panel meeting, through a televoting procedure, based on a structured questionnaire with close-ended questions. Voting was anonymous, to avoid the influence of the dominant personality. After voting, the results were presented to the participants and televoting was repeated to achieve consensus. Key findings The majority of participants (94.8%) believe that valid information on the developments regarding HTA in Greece is not conveyed to them by the official national regulatory sources. Key sources of valid information on developments regarding HTA were: conferences (95.2%), international PAGs (85.7%) and HTA experts/scientists (76.2%). About 76.2% of participants evaluated PAGs’ competence to participate in policy-making concerning HTA scheme formation as moderate or higher. Regarding patients’ effective participation in HTA decision-making, greater importance (points 4 and 5 on a 5-point scale) was given to their education on treatment effects in terms of quality of life (100.0%), basic principles of health economics and pharmaceutical policy (95.5%) and ethical aspects of HTA (95.0%). About 55.0% strongly agree that patients should formally express their opinion on HTA issues, while 72.7% believe that patients’ opinions on HTA issues should be expressed through participation in the process and right to vote. Conclusions The participation of patients in HTA decision-making is an issue not only of justice but also of essence. For a productive participation, PAGs training is essential.

EVIDENCE, VALUES, AND DECISION MAKING

2014 ◽  
Vol 30 (2) ◽  
pp. 233-238 ◽  
Author(s):  
Michael D. Rawlins
Keyword(s):  
Decision Making ◽  
Cost Effectiveness ◽  
Observational Study ◽  
Social Values ◽  
Clinical Excellence ◽  
Health Technology ◽  
Evidence Base ◽  
Social Value ◽  
Value Judgments ◽  
Study Designs

Background: The evidence supporting the use of new, or established, interventions may be derived from either (or both) experimental or observational study designs. Although a rigorous examination of the evidence base for clinical and cost-effectiveness is essential, it is never sufficient, and those undertaking a health technology assessment (HTA) also have to exercise judgments.Methods: The basis for this discussion is largely from the author's experience as chairman of the national Institute for Health and Clinical Excellence (NICE).Results: The judgments necessary for HTA to make are twofold. Scientific judgments relate to the interpretation of the science. Social value judgments are concerned with the ethical principles, preferences, culture, and aspirations of society.Conclusions: How scientific and social value judgments might be most appropriately captured is a challenge for all HTA agencies. Although competent HTA bodies should be able to exercise scientific judgments they have no legitimacy to impose their own social values. These must ultimately be informed by the general public.

scholarly journals Discharge from the acute hospital: trauma patients’ perceptions of care

2016 ◽  
Vol 40 (6) ◽  
pp. 625 ◽  
Author(s):  
Lara A. Kimmel ◽  
Anne E. Holland ◽  
Melissa J. Hart ◽  
Elton R. Edwards ◽  
Richard S. Page ◽  
...  
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Trauma Patient ◽  
Patient Involvement ◽  
Acute Hospital ◽  
Trauma Patients ◽  
Orthopaedic Trauma ◽  
Lack Of Information ◽  
Follow Up Care

Objective The involvement of orthopaedic trauma patients in the decision-making regarding discharge destination from the acute hospital and their perceptions of the care following discharge are poorly understood. The aim of the present study was to investigate orthopaedic trauma patient experiences of discharge from the acute hospital and transition back into the community. Methods The present qualitative study performed in-depth interviews, between October 2012 and November 2013, with patients aged 18–64 years with lower limb trauma. Thematic analysis was used to derive important themes. Results Ninety-four patients were interviewed, including 35 discharged to in-patient rehabilitation. Key themes that emerged include variable involvement in decision-making regarding discharge, lack of information and follow-up care on discharge and varying opinions regarding in-patient rehabilitation. Readiness for discharge from in-patient rehabilitation also differed widely among patients, with patients often reporting being ready for discharge before the planned discharge date and feeling frustration at the need to stay in in-patient care. There was also a difference in patients’ perception of the factors leading to recovery, with patients discharged to rehabilitation more commonly reporting external factors, such as rehabilitation providers and physiotherapy. Conclusion The insights provided by the participants in the present study will help us improve our discharge practice, especially the need to address the concerns of inadequate information provision regarding discharge and the role of in-patient rehabilitation. What is known about the topic? There is no current literature describing trauma patient involvement in decision-making regarding discharge from the acute hospital and the perception of how this decision (and destination choice; e.g. home or in-patient rehabilitation) affects their outcome. What does this paper add? The present large qualitative study provides information on patients’ opinion of discharge from the acute hospital following trauma and how this could be improved from their perception. Patients are especially concerned with the lack of information provided to them on discharge, their lack of involvement and understanding of the choices made with regard to their discharge and describe concerns regarding their follow-up care. There is also a feeling from the patients that they are ready to leave rehabilitation before their actual planned discharge date, a concept that needs further investigation. What are the implications for practitioners? The patient insights gained by the present study will lead to a change in discharge practice, including increased involvement of the patient in the decision-making in terms of discharge from both the acute and rehabilitation hospitals and a raised awareness of the need to provide written information and follow-up telephone calls to patients following discharge. Further research into many aspects of patient discharge from the acute hospital should be considered, including the use of rehabilitation prediction tools to ensure patient involvement in decision-making and a discharge and/or follow-up coordinator to ensure patients are aware of how to access information after discharge.

scholarly journals Resource allocation and health technology assessment in Australia: Views from the local level

2009 ◽  
Vol 25 (02) ◽  
pp. 134-140 ◽  
Author(s):  
Gisselle Gallego ◽  
Kees van Gool ◽  
Dianne Kelleher
Keyword(s):  
Decision Making ◽  
Health Service ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Online Survey ◽  
Local Level ◽  
Healthcare Providers ◽  
Health Technology ◽  
Health Technologies ◽  
Decision Making Processes

Objectives:Several studies have shown that a key determinant of successful health technology assessment (HTA) uptake is a clear, fair, and consistent decision-making process for the approval and introduction of health technologies. The aim of this study was to gauge healthcare providers' and managers' perceptions of local level decision making and determine whether these processes offer a conducive environment for HTA. An Area Health Service (AHS) aimed to use the results of this study to help design a new process of technology assessment and decision making.Methods:An online survey was sent to all health service managers and healthcare providers working in one AHS in Sydney, Australia. Questions related to perceptions of current health technology decisions in participants' own institution/facility and opinions on key criteria for successful decision-making processes.Results:Less than a third of participants agreed with the statements that local decision-making processes were appropriate, easy to understand, evidence-based, fair, or consistently applied. Decisions were reportedly largely influenced by total cost considerations as well as by the central state health departments and the Area executive.Conclusions:Although there are renewed initiatives in HTA in Australia, there is a risk that such investments will not be productive unless policy makers also examine the decision-making contexts within which HTA can successfully be implemented. The results of this survey show that this is especially true at the local level and that any HTA initiative should be accompanied by efforts to improve decision-making processes.

Patient involvement in multidisciplinary treatment planning (MTP).

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 145-145
Author(s):  
Irene Prabhu Das ◽  
Heather Rozjabek ◽  
Mary L. Fennell ◽  
Katherine Mallin ◽  
E. Greer Gay ◽  
...  
Keyword(s):  
Decision Making ◽  
Online Survey ◽  
Patient Involvement ◽  
Treatment Plan ◽  
Multidisciplinary Treatment ◽  
Treatment Decision ◽  
Case Presentation ◽  
Patient Navigators ◽  
Treatment Decision Making

145 Background: Patient involvement in treatment decision-making has been well-studied. However, little is known about how patients are involved in the MTP process prior to their consideration of treatment options. Methods: An online survey was administered to 1,261 Commission on Cancer (CoC)-accredited programs to describe current MTP practice. Survey items addressed team structure and process, case presentation, and patient involvement. A total of 797 (63%) facilities responded. Multiple aspects of patient involvement focusing on the initial case presentation and post-meeting follow-up regarding information provision and communication are examined. Initial descriptive analyses are presented. Results: 97% of facilities reported patients are not invited to attend MTP meetings. Reasons for not inviting patients included: patients may find it overwhelming (62%), physicians not able to speak freely (58%), liability (43%) and privacy (42%) concerns. Of the facilities that do invite patients, 1/3 reported that patients often or always attend. Treatment recommendations from MTP meetings are shared with patients at 75% of facilities, 42% share treatment plans, and 28% give a meeting summary to patients. Nine percent of facilities do not give patients any information from the meeting. Prior to treatment, a written treatment plan is developed at 43% of facilities, and among these, 15% give the plan to patients. Regarding communication about MTP meetings, facilities reported pre-meeting discussions with attending physicians (95%) and patient navigators (21%). Post-meeting follow-up by 93% of facilities is usually done by physicians, 26% by patient navigators and 16% by PA/NPs, and 66% follow-up within 1 week. Conclusions: Initial findings suggest that even if facilities do not invite patients to MTP meetings, they engage patients in various ways at pre- and post-MTP meetings, providing information and having discussions. Physicians are integral in communicating with patients throughout the MTP process. Further study on the multiple facets of patient involvement in MTP is needed to better understand its influence on treatment decision-making.

scholarly journals A Scoping Review of the Health Technology Procurement Decision Process in Indonesia

2019 ◽  
Vol 9 (1) ◽  
pp. 78
Author(s):  
Andrew Cashin ◽  
Roxsana Devi Tumanggor
Keyword(s):  
Decision Making ◽  
Scoping Review ◽  
Technological Development ◽  
New Technology ◽  
Health Technology ◽  
Evidence Base ◽  
Review Literature ◽  
Advanced Technology ◽  
Adoption Of New Technology ◽  
Technology Procurement

Background: There is no doubt technological development in the caring sciences can be an enabler of better outcomes. Technological development and the adoption of new technology can also become a constraint and pose challenges to the current patterns of work and organizational elements. A framework for decision making of when to purchase and incorporate new technology is required.Purpose: This paper aimed to determine what is known of procurement decisions of advanced technology in healthcare generally and particularly in Indonesia.Methods: A scoping review was conducted to ascertain the current understanding of what forms the basis of procurement decisions of health technology generally and particularly in Indonesia.   Results: A paucity of peer review literature was identified. There was no identified peer reviewed literature with a focus on Indonesia. Without a guiding evidence base and agreed decision making framework, it is likely that there is great variation in practices.Conclusion: In the absence of a solid body of literature to inform practices, two principals to move to a sustainable adoption and integration of advancing and emerging technology into practice in the health care sciences are presented, and provide a scaffold to facilitate navigating what can be tricky waters constituted by enthusiasm and trepidation.

OP303 Do You Get The Message? Making HTA Findings Easier For Decision-Makers To Implement

2021 ◽  
Vol 37 (S1) ◽  
pp. 11-11
Author(s):  
Jess Kandulu ◽  
Ed Clifton ◽  
Iain Robertson ◽  
Neil Smart ◽  
Karen Macpherson
Keyword(s):  
Decision Making ◽  
Technology Assessment ◽  
Health Technology ◽  
Evidence Base ◽  
Decision Makers ◽  
Appraisal Committee ◽  
Economic Modelling ◽  
Health Technologies ◽  
Patient Groups ◽  
The Impact

IntroductionOften health technology assessment (HTA) products developed by the Scottish Health Technologies Group (SHTG) did not reach clear directive conclusions because the evidence base for a technology was weak. Despite being methodologically robust, these products did not meet the needs of decision-makers and may have had negligible impact.MethodsSHTG set out to equip and empower the recommendation-making council (that is, appraisal committee) to reach clear conclusions. SHTG broadened the HTA components and types of evidence that could be considered. The increased breadth of evidence included: clinicians attending council meetings to respond to questions; patient groups making submissions and presenting at council meetings; Scotland-specific economic modelling; and consultation on draft recommendations. SHTG also restructured the council for improved deliberative decision-making.ResultsClear directive conclusions were reached in a substantially higher proportion of HTA products (eighty-eight percent in 2019 compared with eight percent in 2017). It became possible for decision-makers to implement findings. It also became feasible to assess the impact and implementation of recommendations.ConclusionsBroadening SHTG's consideration of HTA components has led to a clearer conclusion being reached and stronger messaging for decision makers. This positions SHTG to increase its influence in the use of health technologies in Scotland.

OP244 Tools And Experiences To Facilitate Effective Patient Participation In Health Technology Assessment

2021 ◽  
Vol 37 (S1) ◽  
pp. 9-9
Author(s):  
Ana Toledo-chávarri ◽  
Lucia Prieto Remón ◽  
Nora Ibargoyen ◽  
Máximo Molina Linde ◽  
Yolanda Triñanes Pego ◽  
...  
Keyword(s):  
Decision Making ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Involvement ◽  
National Health System ◽  
Health Technology ◽  
Patient Experiences ◽  
Lessons Learned ◽  
Added Value ◽  
Direct Involvement

IntroductionIn 2017, a Patient Involvement Interest Group (PIIG) was created in the Spanish Network for Health Technology Assessment of the National Health System (RedETS) to facilitate and promote Patient Involvement (PI) in Health Technology Assessment (HTA). The PIIG proposed a decisional flowchart to guide researchers’ in decisions regarding PI methods in HTA. The flowchart proposed a combination of direct involvement and incorporation of patient-based evidence depending on the scope and the aims of the assessment.This work aims to present the flowchart and the results of the evaluation of the latest experiences in PI in HTA in RedETS (2018–2020), including direct-involvement and patient-based evidence.MethodsA survey was sent to the HTA researchers who implemented PI initiatives in RedETS assessments. The survey asked to describe their experiences, lessons learned, challenges and added value regarding the use of direct-involvement, systematic reviews (SR) and primary studies. A descriptive analysis was performed and the results were discussed in an online PIIG workshop.ResultsThirty-two assessments included direct PI, twenty-one SR synthesized qualitative and quantitative studies about patient experiences, values and preferences and eight included primary studies, mainly of qualitative design. Recruitment and the lack of methodological resources were the main barriers both for direct PI and primary studies. Relevance of the included studies was the main barrier for SR. Added value was found in all PI methods. Direct-involvement had an impact on the project plan and PICO definition, outcomes relevance, information about the health condition and treatments. SR contributed with relevant patient-based evidence, deeper assessment of patient experiences, values and preferences and implementation factors. Primary studies developed new or contextualized knowledge directly applicable to decision-making.ConclusionsThe PI flowchart has served to facilitate the incorporation of patient input in HTA reports. The different approaches implemented have allowed to provide relevant and well-grounded data in each report to inform decision-making in patient-centered healthcare provision, but it is necessary that specific training and resources are provided to enable adequate and timely implementation.

scholarly journals Use of Evidence-Informed Deliberative Processes by Health Technology Assessment Agencies Around the Globe

2019 ◽  
Vol 9 (1) ◽  
pp. 27-33 ◽  
Author(s):  
Wija Oortwijn ◽  
Maarten Jansen ◽  
Rob Baltussen
Keyword(s):  
Decision Making ◽  
Best Practices ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Online Survey ◽  
Contextual Factors ◽  
Health Technology ◽  
Appraisal Committee ◽  
Health Technologies ◽  
Deliberative Processes

Background: Evidence-informed deliberative processes (EDPs) were recently introduced to guide health technology assessment (HTA) agencies to improve their processes towards more legitimate decision-making. The EDP framework provides guidance that covers the HTA process, ie, contextual factors, installation of an appraisal committee, selecting health technologies and criteria, assessment, appraisal, and communication and appeal. The aims of this study were to identify the level of use of EDPs by HTA agencies, identify their needs for guidance, and to learn about best practices. Methods: A questionnaire for an online survey was developed based on the EDP framework, consisting of elements that reflect each part of the framework. The survey was sent to members of the International Network of Agencies for Health Technology Assessment (INAHTA). Two weeks following the invitation, a reminder was sent. The data collection took place between September-December 2018. Results: Contact persons from 27 member agencies filled out the survey (response rate: 54%), of which 25 completed all questions. We found that contextual factors to support HTA development and the critical elements regarding conducting and reporting on HTA are overall in place. Respondents indicated that guidance was needed for specific elements related to selecting technologies and criteria, appraisal, and communication and appeal. With regard to best practices, the Canadian Agency for Drugs and Technologies and the National Institute for Health and Care Excellence (NICE, UK) were most often mentioned. Conclusion: This is the first survey among HTA agencies regarding the use of EDPs and provides useful information for further developing a practical guide for HTA agencies around the globe. The results could support HTA agencies in improving their processes towards more legitimate decision-making, as they could serve as a baseline measurement for future monitoring and evaluation.

Sign in / Sign up

Export Citation Format

Share Document