precision medicine patient report outcomes

Role of Patient Reported Outcomes in the era of Precision Medicine

• Advantages of ePROs. Supplement existing clinical data, filling in gaps in information and providing a more...
• ePRO Challenges. They are not in widespread use in clinical practice. Little is known about aggregating this data for...
• Boost to the Precision Medicine Initiative. Patient-generated health data...

Full Answer

How will precision medicine impact healthcare?

Abstract Precision medicine is poised to have an impact on patients, health care delivery systems and research participants in ways that were only imagined 15 years ago when the human genome was first sequenced. While discovery using genome-based technologies has accelerated, these have only begun to be adopted into clinical medicine.

Can precision medicine be translated into clinical care and health policy?

The translation of precision medicine into clinical care and health policy has lagged behind the pace of basic science discoveries.

What stymies implementation of precision medicine?

(4) Diagnostics, Drug Discovery, and the Economics of Precision Medicine As with all new health care interventions, implementation will be stymied if such interventions do not provide demonstrated value or if payers and consumers are unwilling to pay for them.

Is pre-precision medicine unique to America?

Precision medicine is not uniquely American – it is a global agenda (31) - and requires global leadership and perseverance to see it through to its rightful place in health and society. Contributor Information Geoffrey S Ginsburg, Duke Center for Applied Genomics & Precision Medicine, Duke University, Durham, NC 27708, Ph: 919 668 6210.

What are patient-reported outcomes in clinical trials?

Patient-reported outcomes (PROs) are any report of the patients' perspectives about the impact of disease and treatment on their health status, for example quality of life and symptoms, without the interpretation of a clinician, or anyone else [1, 2].

What is patient-reported outcome data?

A patient-reported outcome (PRO) is "an outcome measure based on a report that comes directly from the patient (e.g., study subject) about the status of the patient's health condition without amendment or interpretation of the patient's response by a clinician or anyone else,” according to the National Health Council. ...

What are patient-reported outcome measure?

Patient-reported outcome measures (PROMs) are used to assess a patient's health status at a particular point in time. PROMs tools can be completed either during an illness or while treating a health condition. In some cases, using pre- and post-event PROMs can help measure the impact of an intervention.

What is the success rate of precision medicine?

We found 23.5% patients with partial response rate, 17.6% patients with stable disease. Disease control rate was 41.1% for the patients who received targeted treatment based on results of F1CDx testing. Our results demonstrate promising data in precision medicine in real-community oncology practice.

How do you collect patient-reported outcomes?

Strategies for Collecting High-Quality Patient-Reported OutcomesSet Clear Goals. ... Use Validated Questions When Possible. ... Avoid Multiple Interpretations of Questions. ... Keep It Short and Sweet. ... Ensure Patient Understanding. ... Choose the Best Method for the Target Population. ... Protect a Patient's Right to Refuse. ... Conclusion.

What are two types of patient reported outcome measures?

There are two basic types: General health PROMs can be used to survey patients with any condition. They usually focus on general well-being, mental health and/or quality of life. Condition-specific PROMs usually concentrate on the symptoms of a particular disease.

What are examples of PROMs?

Examples of such PROM instruments include “Starting the conversation,” a brief measure of dietary intake;62 “Exercise as the fifth vital sign,” a brief measure of physical activity;63 School Health Action, Planning and Evaluation System (SHAPES), a school-based self-report physical activity measure;64 and the Morisky ...

What are PREMs and PROMs?

▪ Patient Reported Outcome Measures (PROMs) ▪ Real time patient feedback facilitated by Patient. Reported Experience Measures (PREMs)

Why do we use patient reported outcome measures?

The national Patient Reported Outcome Measures (PROMs) programme began in 2009. The purpose of PROMs is to collect information, from patients themselves, about how well the health service is treating them. PROMs allow us to understand the difference that healthcare interventions make to people's quality of life.

What is the purpose of precision medicine?

Precision medicine, sometimes known as "personalized medicine" is an innovative approach to tailoring disease prevention and treatment that takes into account differences in people's genes, environments, and lifestyles.

What is the future for precision medicine?

Precision medicine offers tremendous opportunity to shape the future of healthcare. While it is currently most advanced in oncology, precision medication also has wider, exciting applications beyond oncology and late-stage disease, such as in rare and genetic diseases, it also holds some promise in treating COVID-19.

What are the pros and cons of personalized medicine?

Advantages and Disadvantages of Precision MedicineThe efficiency of Care: Precision medicine makes decisions based on individual specific factors that affect their health. ... Preventive Care: ... Limit Cost: ... Population Health: ... Infrastructure Requirements: ... Legal Problems: ... The relevance of the Information: ... Healthcare Cost:

What is the CSER2 grant?

The CSER2 grants focus particularly on recruiting diverse racial and ethnic groups and historically underrepresented groups in genomics research (26,27). There is also an emphasis on studying clinical healthcare settings outside of academic medical centers. Other areas of emphasis include greater integration of stakeholder perspectives such as payers.

What is CSER2?

The goal is to accelerate the use of genome sequencing in clinical care by generating innovative approaches and best practices to ensure that the effectiveness of genomic medicine can be applied to all individuals and groups, including diverse and underserved populations, and in healthcare settings that extend beyond academic medical centers. CSER2 includes six clinical sites and one Coordinating Center who will work together to: 1) define, generate and analyze evidence regarding the clinical utility of genome sequencing; 2) research the critical interactions among patients, family members, health practitioners, and clinical laboratories that influence implementation of clinical genome sequencing; and 3) identify and address real-world barriers to integrating genomic, clinical, and healthcare utilization data within a healthcare system to build a shared evidence base for clinical decision-making.

What is the IGNITE network?

The IGNITE Network’s innovative series of pilot demonstration projects aim to enhance translation of validated actionable genomic information into clinical settings and develop and use measures of outcome in response to genome-based clinical interventions. The network has defined and overcome a series of challenges to genomic medicine implementation: 1) Implementation science requires both a transdisciplinary team and an implementation framework. Thus to enable genomic medicine implementation teams with the right expertise need to be assembled. Implementation frameworks should be established that guide intervention deployment, assessment, and analyses. IGNITE adopted and adapted the consolidated framework for implementation research (30) in creating a network focused on developing lessons for the larger community. 2) It is important to optimize the setting and personnel to carry out the implementation research in the clinic. Pre-implementation research is often overlooked as a critical element to ensure that researchers understand and take into account the priorities, concerns and educational needs of these key stakeholders before implementation begins. 3) Genomic medicine research is information technology (IT) intensive. Broad implementation of genomic medicine requires that IT solutions work with an EMR to either incorporate genomic information into it extract phenotypic data from it. Thus IT leadership at the implementing institution needs to prioritize its incorporation.

How does genomic data help in health care?

Health care systems supporting complete learning cycles that encompass both the analysis of data to produce results and the use of those results to develop changes in clinical practices are systems that will allow for optimal learning. Summed across all individuals in such systems, genomic data could inform strategies to improve population healthand contribute to care management. Just-in-time information, guidelines for clinical action, and more information on the clinical utility of genetic testing would help physicians make effective use of genomic information and integrate it in their practices similar to other medical test information.

What are the three platforms of healthcare?

Three platforms are converging in health care: digital health, data science, and precision medicine. Large-scale collection of biological, radiological, and translational bioinformatics datasets are being formed from digital-sensing devices and multi-omic information with both research and clinical-decision support applications. Making full use of these multidimensional data streams necessitates the development of standardized methods of data aggregation and analysis and cross-disciplinary translation of emerging computational techniques, such as machine learning, natural-language processing, and artificial intelligence. The application of these new analytical methods to health care may enable us to define the dynamic patterns of health and disease and to create more efficient and sustainable models of care that are driven by data and technology.

What is the role of health information technology in healthcare?

The health information technology community will need to design secure and interoperable genomics-enabled systems for actionable use in both health care and community settings.

What is personalized medicine?

Personalized medicinerefers to an approach to patients that considers their genetic make-up but with attention to their preferences, beliefs, attitudes, knowledge and social context, whereas precision medicinedescribes a model for health care delivery that relies heavily on data, analytics, and information.