Scientific and Lay Knowledge
Throughout human history, knowledge generated by experts-
religious, governmental, and scholarly- has been seen as the superior and most
respected form of knowledge. Lay knowledge has been seen as more primitive, or a
less reliable form of understanding the world. Science has been traditionally
more trusted as a source of knowledge; however, scientific knowledge can be
abstract, decontextualized, and more difficult to access by the general public.
Often, many discoveries in science were precipitated by
observations of lay knowledge; take for example, the practice of hand-washing
in healthcare practice, developed from the observations of Ignaz Semmelweiz,
the father of hand-washing, who observed lower childbirth mortality in
midwife assisted births compared to medical students-which he attributed to hand-washing. On a more current note, the
health implications of the mining of vermiculite ore in residents of Libby, Montana were first observed by the
community, which then created the impetus for investigation and accountability,
resulting in policy changes on a federal level.
Lay knowledge, is and has always been prominent in healthcare
and health research. Lay knowledge can includes personal accounts of health and
illness (Putland, Baym, & Ziersch, 2011), and is growing in importance in
health research where the cooperation of patients and the relevance of lay
ideas is moving science from the old paradigm of positivism to constructionism.
In our class discussion, some felt that the term “lay
knowledge” in the healthcare sector is more analogous to “feedback”, or “complaints”.
These sentiments carry a negative connotation, and may be part of the
underlying assumptions that the scientific community have that lay knowledge carries
less authority than scientific knowledge.
Yet, these tried and tested methods of communication have been used
successfully to push providers, caregivers, and decision-makers to effect
change. Lay knowledge in this form has certainly advanced healthcare;
particularly in the movement toward patient-centered care. Benchmarking this
feedback, for example Press-Ganey or HCAHPS scores, is driving improvement of
our healthcare systems.
The public has now assumed a different role in influencing
science as evidenced by use of the “crowd”. Epistemologically speaking, "the crowd" draws on
the principles of constructionism, that knowledge is co-created. Wikipedia is
an excellent example of how lay knowledge has advanced. Crowdsourcing is the
umbrella term that overshadows all the activities that can be developed within
the context of the crowd. The crowd can be defined differently, ranging from
the general public, an international collaboration of scientists, or even a
community of gamers. The movement of citizen science http://en.wikipedia.org/wiki/Citizen_science is another great example of
how lay knowledge is changing our understanding of the world and the process of
knowledge generation. Scientists from the Massachusetts of Technology (MIT)
recently collaborated with "citizen-science gamers" to map the
neuronal pathways of a mouse retina to help discover the way the brain
processes images http://www.huffingtonpost.com/2014/05/05/how-eyes-detect-motion_n_5267623.html
Researchers are also increasingly turning to the crowd as a
supporter of research as in the case of crowdfunding.
Thus, as science progresses from a positivist to a
constructionist perspective, it is imperative and advantageous to incorporate
the lay perspective in research; it keeps science grounded in the real world so
that there is a better context to interpret findings and develop future
interventions. Lay knowledge helps keeps science meaningful to society, and
provides the context for use.
E-communication and health
research and healthcare
Since the introduction of the internet, people all over the
globe are connecting, communicating, and collaborating at unprecedented rates.
According to Intel, in the span of one minute, there are more than 204
million emails sent, $83,000 worth of merchandise sold on Amazon, 20 million
photos viewed online, more than 61,000 hours of music played on Pandora, and
over 1.3 million video clips viewed on YouTube worldwide http://scoop.intel.com/what-happens-in-an-internet-minute/.
The internet has drastically transformed the way we
communicate, supplementing and replacing traditional forms such as letters,
faxes, and telegraphs.
E-Communication has now become a mainstay in communicating
and collaborating between research institutions, research team members,
stakeholders, and even participants. There now exists an opportunity to
aggregate data and to perform multisite and international studies that has
never existed before. Researchers are able to more actively engage people who
may be under-represented in the community without the great expense previously
allocated for time and travel. Yet there are barriers to adoption of e-communication in
research- questions about data security, sample bias based on who might respond
to research using e-communication, as well as compromise and possible loss of
data.
E-communication, by virtue of the prerequisite internet
connection, brings up the topic of access and knowledge of using
e-communication technologies. With regards to healthcare delivery through an
e-communication platform- the issue of disparities is highly relevant,
especially among those who are of a lower income level and the elderly. However,
the WHO’ report on mHealth http://www.who.int/goe/publications/goe_mhealth_web.pdf states that there are
over 5 billion wireless subscribers worldwide, of which, only 30% live in
developed countries. Wireless signals today exceed the span of the electrical
grid and networks of paved roads, covering over 85% of the global population.
Indeed, the potential use of e-communication in a public health safety net
system in the US has been explored by Schickedanz et al. (2013), suggesting
that this form of communication, unlike previously thought, may have the
potential to bridge disparities in healthcare http://nhitunderserved.org/resources/media/documents/833-schickedanz.jgim.13.pdf, and may be a useful tool
to address healthcare disparities among certain populations.
E-communication has changed healthcare delivery
dramatically. The
impact on mHealth in healthcare delivery, such as monitoring patients with
cardiovascular conditions such as hypertension, coronary artery disease and
congestive heart failure, is expected to contribute about 47% to chronic
disease management revenues in the US and about 79% in China alone http://www.pwc.in/assets/pdfs/telecom/gsma-pwc_mhealth_report.pdf.
Another way e-communication has changed healthcare is
reflected in the e-patient movement. Patients now form online communities where
they draw on each other as sources of support, knowledge, advice, and identity.
The experience of having a connection with
someone else who is sharing the same experiences is certainly valuable, yet
barriers to adoption may exist: including the potential for misinterpretation
or misinformation, lack of access, technophobia, lack of confidentiality,
security, and privacy of health information, or perpetuation of negative or
erroneous health ideas. A health provider from our group discussion comments
that:
“We do encourage patients to communicate with other patients
as a form of support system, so I think as we move toward the future, this is
yet another form of a meeting or way to communicate that can be done anytime,
anyplace, and with a broader reach. It also has risks - once something is put
out on the internet, it is very difficult to take it back or change it. The
need for "filters" will be important - in that patients will need to
be able to "filter" out what is useful and supportive and what is
not. Perhaps there will be an even greater responsibility on healthcare
professionals to be able to recommend certain web-based communications for
patients that are reputable vs. those that are not. It is incumbent on us to
educate ourselves as our patients will be.”
Health information exchange has traditionally occurred in a
face-to-face context. The advent of e-communication has transformed how health
information is communicated, exchanged, and interpreted in our daily lives.
EHealth has not only been described as a system, but a practice as well,
emphasizing how integral the internet is becoming in modern day
society. Not only have health information systems changed on a societal,
governmental, and institutional level with regards to the healthcare system,
eHealth has also changed how patients communicate to patients, their support
system, and their providers. EHealth has linked providers, patients, and
healthcare systems more efficiently, yet some barriers do exist, such as the
disconnected or non-existent communication between electronic health record
systems, management of provider and patient expectations, and the prohibitive costs
of establishing an eHealth system.
One
of our nurse practitioners stated in our discussion:
“Differing perspectives currently co-exist and some sort of
middle ground will need to be attained. On one hand there are those (both
patients and clinicians) who see eHealth strategies as a solution to address
problems related to access, quality, cost, and patient engagement and
empowerment. This group is probably more familiar and comfortable with
any sort of technology and uses it in other aspects of their lives. On the
other hand, there are those patients and providers who see eHealth as
potentially problematic - changing the relationship aspect of care, disrupting
traditional roles, adding yet an additional burden for both to manage. Most
likely they are less comfortable with technology in their daily lives. For
eHealth to be successful across populations and among clinicians some sort of
compromise between the two poles of attitudes will need to be reached.”
Data (r)evolution
The paradigm shifts of positivism to constructionism in the
generation of knowledge, and the evolution of communication in the internet age
has been discussed in the first two sections. In this final section, the
paradigm shift of data as a static unit of observation to a dynamic,
interactive unit will be discussed.
The Internet of Everthing
(IoE) is a term
that has recently emerged, referring to the way people, processes, data, and
things are interconnected through the internet. The Quantified Self (QS)
movement was born from the convergence of these pillars of the IoE. Started by
two writers of WIRED magazine, QS is now changing the way we look at our health
and lifestyle (check out this video and article for a good overview: http://www.economist.com/node/21548493).
Data from the quantified-self movement has the potential to help
researchers understand patients’ movements, and exercise, sleep, eating, mood,
and other body patterns for applications in symptom management, intervention
efficacy, behavioral modification, and environmental tracking. The list
continues to grow.
As such, the characteristics of data have changed. Data are
bigger, richer, communicated much more quickly and efficiently, collected
unobtrusively, and analyzed and disseminated in real time. New channels of data
collection are developing at a phenomenal pace. This data revolution also has
implications on the roles that participants and researchers traditionally held-
participants are now more active in the collection of data. Researchers are less active in data
collection, but more active and efficient in analysis due to advances in data
visualization and analytics and increased interdisciplinary collaboration.
However, there is the potential to generate a lot of useless
noise from large scale use of this technology.
On the patients’ end- a high level of self-tracking can also be
excessive and border on obsession. Ethical issues may also arise due to the de-personification
of the research participant.
It is paradoxical that on one hand participants are now more
often included in the research process and on the other hand the researcher using
big data is now becoming further removed from participants, both
geographically, and socially. How do we engage
participants in big data research? This makes ethical considerations
more difficult to monitor and enforce as a result of the psychological distance
from the participant. A recent Facebook controversy over the manipulation of
members’ newsfeeds to study emotional impact of news consumption is in line
with ethical issues arising from the use of social media in research http://www.slate.com/articles/health_and_science/science/2014/06/facebook_unethical_experiment_it_made_news_feeds_happier_or_sadder_to_manipulate.html.
In addition, the issues of decontextualizing and reductionism
will have to be addressed as a result of objectifying and quantifying human
behavior in research.
Summary
This blog discussed the paradigm shifts of 1) scientific to
lay knowledge, with the underlying assumptions of positivism and constructionism;
2) movement from traditional communication to e-communication and its
implications on the way people interact and collaborate; as well as 3) the
shift from data as static units observed and collected by researchers to data
as dynamic and unlimited, generated and collected by both researcher and the
lay public. Drivers of the paradigm shifts, barriers to adoption and ethical
issues were also discussed.
These paradigm shifts encompasses a larger shift in
attitudes towards healthcare and healthcare research, driven primarily by
advances in internet communications and connectivity, and will have significant
impact to the way healthcare and health research is practiced and conducted
locally and globally.
Recommended Readings/
Links:
Created by
Participants in Nursing 7106 Context for Advancing Science (and Improving
Health)
University of Utah
College of Nursing PhD Program Summer 2014
Submitted by: Kate
Doyon, BSN, MS, Djin Lai, RN, BSN
This is a test comment for Djin.
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