Vision for the Future: Public and Professional Education and Community Engagement in Genomics
From WikiGenetics
[edit] Public Genomic Information (ordinary interest)
Individuals who have only a passing interest in genetics/genomics present an interesting and challenging stakeholder group, particularly since it is important they are prepared to deal with this information if they find themselves or a family member diagnosed with a disease, or facing various validated risks.
Ten years from now – are we able to envision the overall sophistication of many of our social systems? Perhaps no more than people in the 1990s understood where we would be standing today. As such, it is critical to free oneself from the constraints of education as it is framed today, since it is a system that lags much of other social transformation. To emerge from the usual constraints of education within a system such as NIH is difficult since it is built on an academic model. However, the new age demands a vision not yet exercised in academia, and perhaps NIH is a good proving ground for new models.
[edit] Overview of Current State and Resources
Public genomic education is currently a mix of staid and typical modules, and more imaginative and dynamic web 2.0 interactions. The public receives information intentionally from programs developed by government, academia, disease specific advocacy and the healthcare industry. New entrants to the field include companies, particularly those looking to sell tests and information directly to consumers. There is certainly no overarching plan or even loose network for information, its development, its standards and its dissemination. Other information, not developed in the academic realm, has managed to reach new levels using a variety of modern tools, and viral networks. Ordinary interest people will never be clamoring for this information and so it must be ready in discrete, compact, units ready when they need it – and become high interest consumers.
[edit] Education Needs
[edit] Research Needs
What methods and processes would enable information to be ready and current as consumers' needs increase?
How can the experiences of high interest consumers inform ordinary interest consumers’ information needs?
What impact does preparing ordinary interest consumers have on their readiness for information later on?
If every person has their genome sequenced, and it is readily available information, what will ordinary interest consumers need to be able to advocate for their own privacy, confidentiality, and general needs for information and interpretation?
[edit] Education Efforts on Disease Prevention
To realize the potential and tap into the power of personalized medicine, individuals need to view the ability to prevent disease as a gift of science, technology and medicine. How do we empower individuals to accept this gift and incorporate it into dally life, so that prevention becomes a way of life? Multifactorial risk assessments can be utilized to help individuals know their risk of a disease based on genomic information, family history, clinical genetic services whenever appropriate, personal health status, environmental and lifestyle factors. However, how do we engage individuals to learn about their risks and utilize the information to prevent disease through interventions such as healthy diet and lifestyle, exercise, screening and other pharmaceutical and medical interventions? To reach the public, utilizing the public health infrastructure at the national, state and local levels is key. To be successful in prevention, public health must partner with all types of communities and possibly private industry to have the broadest impact. These partnerships can be utilized to learn about what prevention efforts actually work and for whom, and then strive to implement those preventative measures where appropriate. Those developing and implementing preventative efforts must embrace the reality that for any one disease there may be multiple approaches depending on the populations impacted by that disease. In addition education on prevention, the public must also learn to advocate for a healthcare system and infrastructure that supports disease prevention as a way of life for everyone.
As these ordinary interest consumers understand their genome, and it begins to provide actionable information, how will methods for disease prevention be integrated into their work, play and everyday life? Can this become as simple as integrated biometrics with feedback to incentive systems tied to banks, benchmarks tied to gyms, and reporting to payers with incentives to better premiums for better health? What behavioral incentives can motivate prevention? No one is paid to use Facebook, play video games or watch TV – what can we learn there?
[edit] Family Health History
1.Does family health history collection lead to better health for individuals?
- How much does family health history information aid in diagnosis and treatment in a healthcare setting?
- What is the value of family history information in light of genetic testing?
- How accurate is patient reported data?
- How does family health history feed into PHR or EHRs?
- Does risk communication based upon family health history encourage healthy lifestyle?
- What type of data exists on the value of incorporating risk algorithms into family health history tools?
- Direct impact on consumer health
- Impact after being referred to additional sources for information
- Impact after being advised to consult with a healthcare provider
- Impact when used with a healthcare provider
- How does the impact of risk communication differ based upon family health history information than genomic data?
- How are risk algorithms/information from genomic data used with FHH info?
- How are risk algorithms for family health history determined?
- How is risk communicated?
- What type of data exists on the value of incorporating risk algorithms into family health history tools?
- Does increased communication about health within the family lead to better lifestyle choices and identification of health issues independent of risk?
- Patient empowerment
- Reduced Stigma
- Has research been done on the psychosocial impacts of family health history collection
- How can those stigmas be lessened, bridged?
- Improved care and support within the family
2. How does family health history compare to other health interventions?
- Health indicators
- Sustainability
- Funding
- Integration into existing health programs
- Links to social and cultural issues
- Cultural competency of family health history
- How do perceptions of genetics influence perceptions of family health history?
- How do feelings about disease impact the usefulness of family health history?
- How do genealogy and oral history relate to family health history?
- How do trust of health services and research relate to family health history?
- What is the community tradition around health information?
- Who is the keeper of the information?
- Is it kept orally or in written record or by other means?
- Cultural competency of family health history
- Nontraditional access points to health information (expansion of health beyond medicine)
- Sustainability
- Broad range of stakeholders
- Novel partnerships
- Innovation
- Emotional/personal appeal
3. What tools and resources are needed to be most effective?
- What current tools exist and are they effective?
- Has there been a systematic review of family health history tools?
- What is the goal of each family history tool?
- Can they be easily updated and are they sustainable?
- What criteria has their evaluation been based upon (does it meet those criteria)?
- How do the effectiveness of family health history tools compare?
- What is the accessibility of tools and resources?
- Is the tool available in the correct languages?
- Does the tool require access to medical records?
- What is the literacy level of the tool?
- Does the tool prominently feature names of trusted organizations?
- Does the tool cover or link to specific information on conditions?
- Do photos and graphics in the tool reflect the ethnic or racial background of individuals?
- Does the tool appeal visually to the community?
- How much time does the tool take to complete?
- Can the tool be modified?
- Does the tool discuss environmental as well as genetic risks?
- Does the tool suggest positive lifestyle changes?
- Is the tool applicable to different family structures?
- Is there any potential commercial bias to the tool?
- Does the tool itself collect data?
- Does the tool explain how to collect information from family members?
- Does the tool use folklore or positive health stories?
- Does the tool present the information visually (with pictures) as well as in text?
- Does the tool require computer or web access?
- Does the tool require explanation?
- How are privacy issues addressed by the tool?
- What are the targeted age ranges of the tool?
- Has there been a systematic review of family health history tools?
- Are there gaps in existing tools?
- Do tools meet the needs of consumers, community health workers, healthcare providers, specialists, and researchers?
- What types of data are collected using the tools?
- Do they provide risk assessment?
- Do they allow clinical decision support?
- Do they collect information on the positive health impact of family health history
- Are tools being used collaboratively?
- Can current tools be modified to fill gaps or must additional tools be created?
- What are the needs of the un-addressed communities for a new tool?
- Is there a customizable version or a model that can be adapted?
- Or, are there multiple tools that can be used together to address gaps/information needs?
- Do organizations and the public have access to tools?
- Are the tools in an accessible location?
- Centralized repository
- Appropriate public portal
- Health system or condition specific portal
- Is there a way to discern among tools – how do organizations or the public decide which is most appropriate for a particular purpose?
- Is there appropriate education and marketing of existing tools?
- Are the tools in an accessible location?
4. Future Opportunities
- Health IT integration
- Cross-generational applications
- Art and media campaigns
- Social networking and community identity
[edit] Dissemination of Information
[edit] Access to Quality Information
The current “information age” has resulted in an abundance of health and educational information both in electronic and print forms. Often, this information accumulates more quickly than the scientific and medical evidence base that supports advances in healthcare. The question of access to information is often not about being able to find many sources of information, but instead about having a filtering system or tool to weed through this abundance to find the most quality, accurate, and relevant information. As technology progresses to permit more and more individuals and organizations to produce information, there must be user-friendly and efficient tools to help with this sorting, as well as a culture of consumer consciousness critically examine the information found.
How will information be vetted?
What does evidence based information mean?
How can information remain accessible in many forms for many cultures and needs?
[edit] Special Issues of Underserved Communities
As the percentage individuals, including those from underserved communities, with internet access continues to increase, web-based information and filtering mechanisms will hopefully work to level the playing field of access to health information. However, much information is produced without specific populations in mind. Going forward, information should be customizable, culturally competent, available in a variety of languages, and produced in various media forms. Traditionally, underserved and disenfranchised communities are hesitant to question prevailing establishment, and instilling a culture of critical questioning and evaluation of information will require a targeted and concerted effort. What safeguards will need to be crafted for underserved and underrepresented communities to have an equal playing field to information? How does the information paradigm suffer from a lack of information about these populations and their interaction with the information? How does the science suffer if these communities have no access point to enter the research, either in basic science or in translation of that science?
[edit] Communicating Risk (Genetic Risk and Probability)
Individuals perceive genetic risk and probability differently based on the delivery of that information, situation, culture, timing, and a host of additional factors. In order to most accurately communicate risk and probability, the delivery mechanism should again, be customized, culturally competent and available in a number of different manners.
Are there other models for understanding risk that the genomics field needs to understand? How can fairly complicated algorithms become the basis for simple decision making in a preventative context?
[edit] Direct to Consumer Marketing of Services
The movement of consumer-driven healthcare has created a market opportunity for direct to consumer (DTC) genetic services. The blending of consumer desires to be informed and to share in decision-making with health professionals with advances in genetic technologies will provide an opportunity ripe for consumer access to genetic information. In looking to the future, and also considering the pace of genetics innovation, we must ensure the purposeful evolution of the DTC market. It must respond to the trend toward empowering consumers with information about their genetic make-up. However, it must provide a platform for enhancing the patient-provider relationship and giving the consumer the tools to evaluate the credibility of information at all stages of the process.
[edit] DTC Genetic Testing and Scans
How will consumers learn how to not only evaluate the information obtained from the services, but the DTC company claims as well? Will it be through policy initiatives, where companies are required to include, prominently displayed on the websites, their laboratory certification status, the evidence for their claims, and information for consumers on how to follow up with the test results? Regulation of DTC services will not solve the question of whether or not an interested public is capable of interpreting the information without interaction with a health professional. How can the health community as a whole feel ensured that the information provided with genetic services is not only being accessed, but understood?
[edit] DTC Sequencing
Genome sequencing goes beyond the DTC market of genetic testing and genome scans by providing the pinnacle of access to information, and more so ownership of information, about one’s health. The offering of genome sequencing directly to consumers creates perhaps an unintentional disconnect between the individual and the health setting, where the potential value of the genome can be realized. If genome sequencing is the key to individualized care, it is essential that it provide the foundation for collaboration and education in health settings. The technology has advanced beyond the evolution of care, and health professionals must be prepared to engage with individuals about this information.
The evolution of the DTC market provides ample opportunity for public and health professional genetics education. Encouraging a “reflective” public, or consumers equipped with tools allowing them to be critical of information, is an essential component of access to a wealth of information. Just as the information obtained by the consumer is sought out independently, so will be the evaluation of that information. These tools must be delivered in concert with the services, most likely at the “point of sale”. Furthermore, a true benefit of the DTC market is the creation of a new forum for individualized discussions between health professionals and their patients. Consensus must be reached regarding when a health professional’s intervention is not only necessary, but possibly required, to understand information from DTC genetic services (whether because of a particular condition or clinical decision-making). This consensus will guide the development of materials, resources, or tools, which can be utilized by the health professional in discussions about DTC genetic services.
[edit] Access to Services for Underserved Communities
How are misconceptions and longstanding fears being addressed by outreach programs centered around access to services for underserved communities? Misconceptions and issues centered around longstanding fears and general mistrust of western biomedical services can be a impediment to both education about services available, as well as the utilization of such services by underserved communities (provided that access is available).
What policies are in place to assure that there are no future grounds for “mistrust” of such services?
How are the benefits (and shortcomings) of GINA (Genetic Information Non-Discrimination Act) being communicated (perhaps in conjunction to services that underserved communities should be more aware of) to underserved communities?
How are communities outside of the “mainstream” (underserved) being empowered to make their voices heard, as well as advocate for greater access to services?
Who (outside of the underserved communities) should be involved in the empowerment of these communities, who in turn will advocate for greater access to services?
On a systems level, what provisions (financial, political, medical, etc) are in place to ensure that if underserved communities push for more access to services, that they will be heard and answered?
It is imperative that in going forward with increasing access of services to underserved communities that in every step of the way, the voice of the underserved communities is not only heard, but incorporated and understood. Instead of assuming what the needs of the underserved community is, ask the community what they want, what they need, and work with the community to ensure that what they want is delivered to them in the most effective manner possible.
[edit] Behavioral Change Impact of Information on Risk Behaviors
[edit] Public Health Education
Knowledge of disease risks at the individual level is a new foundation of health with tremendous potential. This potential can only be maximized if the information is used to minimize negative health behaviors and maximize positive health behaviors. We must tap into what we know of these positive and negative behaviors for health overall and for specific common and rare diseases. Working with diverse populations is key to determining what will work within any given population. Broad-based collaboration to study behavior changes and promote effective changes is key. We have much more to learn, including, what is needed to change behavior in addition to information? What does a population need access to in order to make positive behavioral changes? Some examples include access to healthy foods, exercise programs, safe environments for exercise, healthy living and working environments, as well as screening, medical and behavioral health services regardless of insurance or socio-economic status. Ultimately, how will we learn what behavior changes are effective for whom, and how do we promote those changes so that they are sustainable throughout the lifespan? What type of public-private partnerships can be formed to promote and ensure behavior change?
[edit] Integration of New Technologies
[edit] Social Networking
The future of social networking in a multitude of forms is already apparent. As it overtakes many other forms of communication and interaction, it will be incumbent upon those wishing to remain relevant in education and engagement to employ and expand the tools. How is the social network area a tool for dissemination of genomic information? How much does form follow function? Is this confluence of the two sciences not yet fully mapped? What would the map of the two interacting with each other completely look like?
[edit] Using Technology for Messaging
See above – understanding twittering, Google Health, microblogging and a host of other methods of communication now, will be critical for understanding what methods will be useful in the roll out of information in novel forms to unique audiences. How do we find the emerging win-win messaging technologies and then embed them in the messaging? And visa versa.
[edit] Barriers of New Technologies
While once it was important to pay some attention to the youth in a field, the tsunami of digital information has created a niche for very young and very creative genius. It is not always easy for the staid, in-power, leadership to be attuned, let alone to adopt early various cutting edge technologies. How can the genomics education field be ready to mine this area?
[edit] Accessing the Digital Divide
The digital divide will level out on the one hand, most Americans will have access to information via the web. But since we will be informed in all disciplines globally – mindful of emerging vectors (with ready alert in advance by Google tagging of email patterns, rather than waiting for nurses to die in field hospitals), and the need to quantify the effects of temperature and environment – as the entire genome is digitized this knowledge will require companion social mechanisms that allow delivery and dissemination in even non-in silico environs.
[edit] Age Divide
We will face a time of enormous numbers of elders, needing care from a smaller number of middle aged individuals. What pressures does this put on the emerging information systems? What of the inability of elders to access digital media with the same facility as the then middle aged individuals? What are the special genomic concerns of the elderly in an age when we can increase lifespan?
[edit] Public Genomic Education (high interest)
[edit] Related Wikiadvocacy articles
Family Health History: http://wikiadvocacy.org/index.php/Family_Health_History
[edit] Reference
Genetic Alliance. 2007. Understanding Genetics: A Guide for Patients and Heath Professionals. http://www.geneticalliance.org/ws_display.asp?filter=pubs.understanding.genetics
[edit] Resources
A Patient's Guide to Genetic Counseling
[edit] External Links
American Society of Human Genetics. (2004). Your Family History. http://www.genednet.org/pages/consumer_family.shtml
American Society of Human Genetics. Consumer Guide to the Privacy of Your Family History Information. http://www.ashg.org/pdf/REVISED%20Consumer%20Guide%20Family%20History%20Privacy%20Law%20-%20jbwb.pdf
Bennett RL. The Practical Guide to the Genetic Family History. New York: Wiley-Liss, Inc. 1999.
Centers for Disease Control and Prevention. Office of Genomics and Disease Prevention. Using Family History to Promote Health. http://www.cdc.gov/genomics/public/famhistMain.htm
Genetic Alliance. (2004). Taking a Family History. http://www.geneticalliance.org/ws_display.asp?filter=fhh
March of Dimes. Genetics and Your Practice. http://www.marchofdimes.com/gyponline/index.bm2
My Family Health Portrait. http://familyhistory.genome.gov
U.S. Department of Health and Human Services. (2004) U.S. Surgeon General’s Family History Initiative. http://www.hhs.gov/familyhistory/
Genetic Alliance (2007) Current Community Based Family History Initiatives. http://geneticalliance.org/ws_display.asp?filter=ccfhh
