PLoS ONE: Citizen Participation in Patient Prioritization Policy Decisions: An Empirical and Experimental Study on Patients' Characteristics

PLoS ONE: Citizen Participation in Patient Prioritization Policy Decisions: An Empirical and Experimental Study on Patients' Characteristics

"The results of the survey questions showed that the vast majority of respondents agreed to prioritize patients with life threatening diseases and patients with acute diseases over all other patients. All criteria that described the patient's social engagement outside the family or socio-economic status (e.g., income, unemployment) were rejected as possible criteria for prioritization. A similar pattern could be observed in the discrete choice experiment: health status received the highest importance weight, whereas socio-economic status received a very low weight in terms of deciding which patient should be treated first. There is considerable agreement that those in need, i.e., the severely ill patient, should be treated first [1], [5]–[7]. Socio-economic status was not considered acceptable, but is a commonly practiced criterion in the daily routine of physicians [40], if not explicitly, at least implicitly so [41], [42]."


"In particular, medical criteria are highly accepted for prioritizing patients whereas socio-economic criteria and lifestyles are rejected. Especially the DCE showed that health status and quality of life were the only attributes that respondents would ultimately likely include in a decision-making process about which patients to prioritize for care. Policy makers in Germany have been very reluctant to even discuss the topic; indeed, all ministers of health over the last decade or so have refused to even talk about this issue. The present study shows that the “voice of the patient” – reliably captured through the methods used here – can be encapsulated in statistical models and thus introduced into policy-making settings [15]. The methods and findings illustrated in this research can be used to 1) increase citizen participation in the political discussion concerning this substantive policy topic, 2) define the scope of policy actions within the realm of the feasible, and 3) frame communications between policy-setting bodies and the population."

Improving cancer control in Canada through knowledge translation: from in-the-field projects to policy initiatives in a new standing section in Current Oncology

Improving cancer control in Canada through knowledge translation: from in-the-field projects to policy initiatives in a new standing section in Current Oncology

Perspective: Postmarketing Surveillance of Medical Devices — Filling in the Gaps — NEJM

abstract: Variation and Consternation: Access to Unfunded Cancer Drugs in Canada

".... The majority of respondents felt all methods of accessing unfunded intravenous cancer drugs should be available (76% in their own center; 60% in private clinics) and used these methods to access these medications (81% in their own institution; 62% in private clinics)...."



Conclusion:
Access to effective but unfunded cancer drugs varies across Canada. Policymakers need to consider whether this is consistent with articulated values of the system and whether currently planned processes address these inconsistencies. Key stakeholders need to consider the merits of the different means of accessing these drugs to appropriately and fairly integrate access into publically funded health care systems like that of Canada and other systems like that of the United States, which could face similar limits in the future.

How Will States and the Feds Align Medicaid and Subsidized Health Care? The Commonwealth Fund

abstract: Policy and advocacy in the quest for effective translational breast care research.

Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material.

Authors’ conclusions There is little evidence from randomised controlled trials of the effects of consumer involvement in healthcare decisions at the population level. The trials included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of involving consumers in these decisions.
   Comment 1:This paper is an issue for public health policy-makers not clinicians. Consumer involvement has a great risk of being tokenistic.  Comment 2:As a community health professional, the results will serve as an evidence to involve health care consumers in the process of policy and guideline formulation.  Comment 3:
The evidence presented that face-to-face interactions with consumers is the most effective type of involvement for developing patient educational materials is helpful for clinicians.

IAPO: Patient Involvement in Health Policy, Systems and Delivery | A global voice for patients

Why is Patient Involvement in Health Policy Important? Healthcare policy decisions, at whatever level they are made, will ultimately affect patients' lives. Therefore patients have a moral and ethical right to play a meaningful role in developing healthcare policies.