Final Report Summary - RISK-UPDATE (Identification of the process by which patients recall and UPDATE their subjective RISK assessments for various diseases to incorporate objective genetic risk information)
This report summarizes reintegration project IRG 268224 (Risk-Update: Identification of the process by which patients recall and UPDATE their subjective RISK assessments for various diseases to incorporate objective genetic risk information as well the successful professional reintegration of Prof. Talya Miron-Shatz in Israel after a 4-year post-doctoral fellowship with Nobel Laureate Daniel Kahneman at Princeton University, USA. At this point in time, she is an established authority on patient comprehension and risk communication, no doubt largely thanks to the European Research Council Support.
The original goals of the project were to quantify the degree to which genetic risk information (in the case of Alzheimer's disease – APOE gene variant, and in the case of breast cancer – BRCA 1 and BRCA 2 gene mutations) and were accurately recalled and adopted. Furthermore, the project aimed to link lack of recall and adoption with patient characteristics – cognitive (numeracy), emotional (perceived risk of having the mutation and of developing the disease) and experiential (presence of one or more relatives with the disease, and, in the case of breast cancer, with the gene mutation).
At this point in time, marking the project's conclusion, the goals were achieved and even exceeded. Prof. Miron-Shatz pursued the research agenda with great success. The work on breast cancer has resulted in five peer reviewed publications so far, in respectable venues such as Psycho Oncology (Impact factor: 4.044) Judgment and Decision Making (Impact factor: 2.62) and Health Expectations (Impact factor: 2.852). Another paper has been accepted to the Journal of Genetic Counseling . This shows how the knowledge is being disseminated academically within various realms – going beyond genetic counsellors, to other health professionals and researchers, as well as to researchers of decision making. On top of this, the research group, which includes Yaniv Hanoch of Plymouth University, England, and Elissa Ozanne of Dartmouth College, USA, has now expanded to include Andrew Barnes, a health economist from Virginia Commonwealth University, USA. The highly qualified team are finalizing two manuscripts – one on willingness to test for breast cancer among high risk women, and another on women's ability to choose the risk format which promotes understanding. Thus, the ability to set aside time for research, to have a post-doc, and to travel to meet collaborators, has been incredibly beneficial for the project.
The end of the grant does not mean the end of the work within the research paradigm. The work on the very complex issue of Alzheimer's Disease is continuing – the first manuscript, on recall and adoption of risk information, is in final stages of preparation with the collaborators from Harvard University, University of Michigan, and Ohio State University. Furthermore, Prof. Miron-Shatz presented a poster on the topic with an Israeli PhD student from Hebrew University of Jerusalem, Guy Itzhakov, and they are now working on a manuscript examining long term changes in Alzheimer's Disease risk information recall and adoption. This means that for both projects, additional papers will be published even when the grant period is over.
The impact of the IRG grant goes far beyond the specific papers:
1. Professional impact: The research paradigm on understanding risk information has implications that extend far beyond the specific topics stated in the grant. Along with the PhD student she has been advising through Tel Aviv University, they researched how pregnant women incorporate risk information from the triple serum test into their decision of whether or not to undergo amniocentesis. This work has resulted in two accepted papers (Health Expectations , Journal of Communication in Healthcare) and another one with 'revise and resubmit' in the Israel Journal of Health Policy Research .
2. Industry impact: Based on the knowledge gained on people's difficulty to understand risk information and medical information in general, and am applying it as an advisory board member of Telesofia Medical, and consultant to numerous start-up companies in Israel and the USA.
3. Promotion: The high volume of publications resulting from the research resulting from the project has been a definite consideration in the promotion from Assistant Professor (senior lecturer) to an Associate Professor position. The promotion occurred in July 2013, only 8 years after Miron-Shatz completed her PhD.
4. Reintegration in Israel: Prof. Miron-Shatz is now firmly established in Israel, professionally and financially. She recently received a grant from Pfizer Israel to study prescriber behaviour. Another grant, from Israel's National Institute of Health Policy Research allows her and a collaborator, Dr. Avi Zafrir, to study older women's comprehension of fertility chances. The Center for Medical Decision Making has been established at the Ono Academic College, with collaborators from the college, from Israel, and from Germany, England and the USA. The grant has allowed fruitful and meaningful research and promoted broad international collaboration, while residing in Israel.
On a personal note, Miron-Shatz’s son, who was a high school student in Princeton when she finished her work there, decided to return to Israel following his mother. He is now a student at Tel Aviv University, and already the author of two peer reviewed papers, thus launching the careers of a new generation of qualified researchers joining the European research arena.
Scientifically, the final results of the project show a distinct difficulty of patients in understanding and interpreting risk information. This applies to genetic counselling, as well as beyond it, to medical information in general. The intensive research and public involvement is being carried out with the purpose of simplifying the presentation and communication of medical information, and, with the project currently being carried out within the REVEAL framework of Alzheimer's Disease research, to examine the guidelines within which risk communication is conveyed. Due to the academic credibility gained from research conducted under this grant, Miron-Shatz is able to carry this message into industry, for example within systems designed to increase patient adherence to medication.
Within the Ono Academic College, she has established a Centre for Medical Decision Making, with colleagues from the college, from Israel's leading hospitals and universities, and institutes such as UCLA, Essen University, Dartmouth, and more.
In an era of ever increasing patient empowerment and patient centred care, such a study is unique in its commitment to not only map extant patient use of information, but also to offer means for furthering such use and involvement. This has societal value, especially when considering weaker populations.
The original goals of the project were to quantify the degree to which genetic risk information (in the case of Alzheimer's disease – APOE gene variant, and in the case of breast cancer – BRCA 1 and BRCA 2 gene mutations) and were accurately recalled and adopted. Furthermore, the project aimed to link lack of recall and adoption with patient characteristics – cognitive (numeracy), emotional (perceived risk of having the mutation and of developing the disease) and experiential (presence of one or more relatives with the disease, and, in the case of breast cancer, with the gene mutation).
At this point in time, marking the project's conclusion, the goals were achieved and even exceeded. Prof. Miron-Shatz pursued the research agenda with great success. The work on breast cancer has resulted in five peer reviewed publications so far, in respectable venues such as Psycho Oncology (Impact factor: 4.044) Judgment and Decision Making (Impact factor: 2.62) and Health Expectations (Impact factor: 2.852). Another paper has been accepted to the Journal of Genetic Counseling . This shows how the knowledge is being disseminated academically within various realms – going beyond genetic counsellors, to other health professionals and researchers, as well as to researchers of decision making. On top of this, the research group, which includes Yaniv Hanoch of Plymouth University, England, and Elissa Ozanne of Dartmouth College, USA, has now expanded to include Andrew Barnes, a health economist from Virginia Commonwealth University, USA. The highly qualified team are finalizing two manuscripts – one on willingness to test for breast cancer among high risk women, and another on women's ability to choose the risk format which promotes understanding. Thus, the ability to set aside time for research, to have a post-doc, and to travel to meet collaborators, has been incredibly beneficial for the project.
The end of the grant does not mean the end of the work within the research paradigm. The work on the very complex issue of Alzheimer's Disease is continuing – the first manuscript, on recall and adoption of risk information, is in final stages of preparation with the collaborators from Harvard University, University of Michigan, and Ohio State University. Furthermore, Prof. Miron-Shatz presented a poster on the topic with an Israeli PhD student from Hebrew University of Jerusalem, Guy Itzhakov, and they are now working on a manuscript examining long term changes in Alzheimer's Disease risk information recall and adoption. This means that for both projects, additional papers will be published even when the grant period is over.
The impact of the IRG grant goes far beyond the specific papers:
1. Professional impact: The research paradigm on understanding risk information has implications that extend far beyond the specific topics stated in the grant. Along with the PhD student she has been advising through Tel Aviv University, they researched how pregnant women incorporate risk information from the triple serum test into their decision of whether or not to undergo amniocentesis. This work has resulted in two accepted papers (Health Expectations , Journal of Communication in Healthcare) and another one with 'revise and resubmit' in the Israel Journal of Health Policy Research .
2. Industry impact: Based on the knowledge gained on people's difficulty to understand risk information and medical information in general, and am applying it as an advisory board member of Telesofia Medical, and consultant to numerous start-up companies in Israel and the USA.
3. Promotion: The high volume of publications resulting from the research resulting from the project has been a definite consideration in the promotion from Assistant Professor (senior lecturer) to an Associate Professor position. The promotion occurred in July 2013, only 8 years after Miron-Shatz completed her PhD.
4. Reintegration in Israel: Prof. Miron-Shatz is now firmly established in Israel, professionally and financially. She recently received a grant from Pfizer Israel to study prescriber behaviour. Another grant, from Israel's National Institute of Health Policy Research allows her and a collaborator, Dr. Avi Zafrir, to study older women's comprehension of fertility chances. The Center for Medical Decision Making has been established at the Ono Academic College, with collaborators from the college, from Israel, and from Germany, England and the USA. The grant has allowed fruitful and meaningful research and promoted broad international collaboration, while residing in Israel.
On a personal note, Miron-Shatz’s son, who was a high school student in Princeton when she finished her work there, decided to return to Israel following his mother. He is now a student at Tel Aviv University, and already the author of two peer reviewed papers, thus launching the careers of a new generation of qualified researchers joining the European research arena.
Scientifically, the final results of the project show a distinct difficulty of patients in understanding and interpreting risk information. This applies to genetic counselling, as well as beyond it, to medical information in general. The intensive research and public involvement is being carried out with the purpose of simplifying the presentation and communication of medical information, and, with the project currently being carried out within the REVEAL framework of Alzheimer's Disease research, to examine the guidelines within which risk communication is conveyed. Due to the academic credibility gained from research conducted under this grant, Miron-Shatz is able to carry this message into industry, for example within systems designed to increase patient adherence to medication.
Within the Ono Academic College, she has established a Centre for Medical Decision Making, with colleagues from the college, from Israel's leading hospitals and universities, and institutes such as UCLA, Essen University, Dartmouth, and more.
In an era of ever increasing patient empowerment and patient centred care, such a study is unique in its commitment to not only map extant patient use of information, but also to offer means for furthering such use and involvement. This has societal value, especially when considering weaker populations.
