The Public Health Genomics Translation Gap: What We Don’t Have and Why It Matters

Williams, Marc S.

doi:10.1159/000334341

Cited by 12 publications

(12 citation statements)

References 65 publications

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“…A clinical study design facilitating relevant information gathering for clinical practice is the comparative effectiveness research [2,7,44]. This research comprises a direct comparison between 2 approaches of care and their effectiveness in real-world settings, integrates biomarker studies into traditional care, and increases the number of participants in data collection [19].…”

Section: Resultsmentioning

confidence: 99%

“…Automated CDSs address the lack of infrastructure for delivering treatment and care information and should include genomic and nongenomic health data in order to combine genotypes and standard clinical parameters in an interactive informatics portal, including electronic medical records [18,25,27,30,42]. Healthcare professionals can catch up with latest scientific findings by continuous dissemination of study results on relevant biomarkers and incorporate risk assessment within disease prognosis and treatment prescription, while preventing an information overload [3,44,45]. The information delivery should also be in a timely fashion, i.e.…”

Section: Resultsmentioning

confidence: 99%

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An Index of Barriers for the Implementation of Personalised Medicine and Pharmacogenomics in Europe

Horgan¹,

Jansen

Leyens

et al. 2014

Public Health Genomics

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Background: Personalised medicine (PM) is an innovative way to produce better patient outcomes by using an individualised or stratified approach to disease and treatment rather than a collective treatment approach for patients. Despite its tangible advantages, the complex process to translate PM into the member states and European healthcare systems has delayed its uptake. The aim of this study is to identify relevant barriers represented by an index to summarise challenging areas for the implementation of PM in Europe. Methods: A systematic literature review was conducted, and a gaps-and-needs assessment together with a strengths-weaknesses-opportunities-and-threats analysis were applied to review strategic reports and conduct interviews with key stakeholders. Furthermore, surveys were sent out to representatives of stakeholder groups. The index was constructed based on the priorisation of relevant factors by stakeholders. Results: A need for stakeholder-agreed standards at all levels of implementation of PM exists, from validating biomarkers to definitions of ‘informed consent'. The barriers to implement PM are identified in 7 areas, namely, stakeholder involvement, standardisation, interoperable infrastructure, European-level policy making, funding, data and research, and healthcare systems. Conclusions: Challenges in the above-mentioned areas can and must be successfully tackled if we are to create a healthier Europe through PM. In order to create an environment in which PM can thrive for the patients' best outcomes, there is an urgent need for systematic actions to remove as many barriers as possible.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

An Index of Barriers for the Implementation of Personalised Medicine and Pharmacogenomics in Europe

Horgan¹,

Jansen

Leyens

et al. 2014

Public Health Genomics

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“…38 There is also a growing need to improve public and professional knowledge of genomics and, now, personalized medicine. [39][40][41][42][43] Although these educational needs certainly existed before the emergence of personalized medicine, it is hoped that the increasing interest in the translation of personalized medicine tests and technologies will renew efforts to increase public and professional discourse of the benefits and risks of personalized genomic tests that aim to stratify patients and inform treatment decision making, and not ration health care.…”

Section: Discussionmentioning

confidence: 99%

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

et al. 2013

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Our objective was to explore citizens' informed and reasoned values and expectations of personalized medicine, a timely yet novel genomics policy issue. A qualitative, public deliberation study was undertaken using a citizens' reference panel on health technologies, established to provide input to the health technology assessment process in Ontario, Canada. The citizens' panel consisted of five women and nine men, aged 18-71 years, with one member selected from each health authority region. There were shared expectations among the citizens' panel members for the potential of personalized medicine technologies to improve care, provided they are deemed clinically valid and effective. These expectations were tempered by concerns about value for money and the possibility that access to treatment may be limited by personalized medicine tests used to stratify patients. Although they questioned the presumed technological imperative presented by personalized medicine technologies, they called for increased efforts to prepare the health-care system to effectively integrate these technologies. This study represents an early but important effort to explore public values toward personalized medicine. This study also provides evidence of the public's ability to form coherent judgments about a new policy issue. Concerned that personalized tests might be used to ration care, they suggested that treatment should be made available if patients wanted it, irrespective of tests that indicate little benefit. This issue raises clinical and policy challenges that may undermine the value of personalized medicine. Further efforts to deliberate with the public are warranted to inform effective, efficient and equitable translation of personalized medicine.

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“…Resistance at this level, deliberate or accidental, can delay the endorsement necessary for new technologies to win acceptance and introduction into standard practice. Sometimes it may even be the case that local interests of an existing technology conspire to reject newer competition [14]. …”

Section: Member State Competence and Inactionmentioning

confidence: 99%

Leviathan, or the Rudder of Public Health

Horgan¹,

Ricciardi

2017

Biomed Hub

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In the world of modern health, despite the fact that we've been blessed with amazing advances of late - the advent of personalised medicine is just one example - “change” for most citizens seems slow. There are clear discrepancies in availability of the best care for all, the divisions in access from country to country, wealthy to poor, are large. There are even discrepancies between regions of the larger countries, where access often varies alarmingly. Too many Member States (with their competence for healthcare) appear to be clinging stubbornly to the concept of “one-size-fits-all” in healthcare and often stifle advances possible through personalised medicine. Meanwhile, the legislative arena encompassing health has grown big and unwieldy in many respects. And bigger is not always better. The health advances spoken of above, an increased knowledge on the part of patients, the emergence of Big Data and more, are quickly changing the face of healthcare in Europe. But healthcare thinking across the EU isn't changing fast enough. The new technologies will certainly speak for themselves, but only if allowed to do so. Acknowledging that, this article highlights a positive reform agenda, while explaining that new avenues need to be explored.

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The Public Health Genomics Translation Gap: What We Don’t Have and Why It Matters

Cited by 12 publications

References 65 publications

An Index of Barriers for the Implementation of Personalised Medicine and Pharmacogenomics in Europe

An Index of Barriers for the Implementation of Personalised Medicine and Pharmacogenomics in Europe

Citizens' perspectives on personalized medicine: a qualitative public deliberation study

Leviathan, or the Rudder of Public Health

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