Health care
The major relationship in health care is practitioner/patient; however, there are many different practitioner roles (e.g. doctors, nurses, dentists, physiotherapists). Unlike buyers and sellers, practitioners and patients can pursue health care without the other. Examples would be a medical researcher who works in a laboratory rather than with patients, and a layman applying ice to his head for a self-diagnosed concussion. The last example is not uncommon: would-be patients having no choice but to try and heal themselves without the benefit of a professional practitioner. This is not only the case in poor countries where there are no doctors, but also wealthy countries that do not ensure their citizens’ health care.
Healthcare administrators also serve an important role in information literacy. I include all non-medical personnel as administrators: secretaries, food service providers, custodians, security staff, etc.
Patient as seeker
Patients are often encouraged to Locate for themselves, especially since the emergence of the Web. From an information literacy standpoint, this offers both opportunities and problems. Although there is lots of secondary information, patients most probably do not have proper Identify, Analyze and Use skills to convert it into information literacy. Some patients will have better education and more general health knowledge than others. A person with poor education and little experience is unlikely to achieve information literacy no matter how many journals or websites are available to them via Google.
Consider two patients with ankle injuries sustained from running. One has an extensive college running background and worked with personal trainers on similar injuries, while the other never went to college nor ran seriously before. Their ankles are swollen and hurt, and there are thousands of secondary sources available that describe how to reduce the pain and swelling. Lots of information choices can be a good thing, but can also pose problems. Which of the thousands of sources are credible? Information found on informal discussion boards will make more sense to seekers without medical backgrounds; however, more understandable does not always mean more knowledgeable. Also, not all of the sources will agree: some might say apply heat to the swelling, others ice, still others might recommend various combinations of the two. Which is correct? Seekers can become frustrated by the contradictions. The experienced runner may be able to juggle all the information options and apply what is best to their individual problem. The novice might become frustrated, or worse proceed improperly and do further damage.
Patient as provider
Patients provide the most important information available in health care: their own symptoms and diagnostics (addressed further under Practitioner as seeker). The Web has also transformed patients into secondary information providers via blogs and private sites. But because there is little quality control on the Web, patients must take it upon themselves to be responsible with the information they provide, and identify themselves as non-professionals. They must also be honest about their healthcare experiences. Unfortunately, this is not always the case, which makes their information more dangerous for a seeker without good Analyze skills. One could counter that it is a seeker’s responsibility to discern what is authoritative from what is not; again, however, not everyone has a breadth of healthcare experience to help them place into context well-expressed words that deal with healthcare issues. Hence, what may be nonsense covered with impressive medical jargon could pass as legitimate.
Interview with a Saudi Arabian patient: anonymous
His was an interesting interview because he has received health care in both the United States and Saudi Arabia. He acknowledges that both systems require patients to be information providers in terms of answering personal questions. Although he had never before heard of the term ‘information literacy’, he understands the importance of it as related to health care. In fact, he equates overall well-being with information literacy. However, he considers that there is not enough information providing responsibility placed on patients in Saudi Arabia, and the information sought from them is often unrelated to health care. He claims that Saudi health administrators seek irrelevant information from patients (income, family relations, etc.).
He also claims that information provided to those in health care is not as confidential in Saudi Arabia as it is in the United States. Overall, he contends that the United States provides better health care, and it is in large part due to information literacy. He feels safer providing information in the United States, and that providing it will make a positive difference in his health care. ‘Here [United States] I know that my information will not be spread around, used against me; there [Saudi Arabia] I do not have the same confidence.’ I asked if he blames the practitioners (e.g. doctors, nurses) for this lack of confidentiality; he said ‘No … It is the hospital administrative staff – they interfere with the medical [staff].’ I asked if he thought there was too much responsibility placed on patients to be information providers in either the United States or Saudi Arabia; he answered no. Quite the opposite: he believes there is not enough responsibility, especially in Saudi Arabia.
‘They do not even ask about TB [tuberculosis], … if a patient has TB. I can be sitting there in the triage, and the patient next to me can have TB. Now, in addition for what I already came in to be treated, I have to worry if I’m going to get TB. They don’t ask about TB or even tobacco usage.’
He is impressed with the opportunities available to patients who seek information in the United States; in Saudi Arabia, by contrast, ‘Health education is not good, and patients don’t care. Health educators sit on information; they do not share.’
He also believes that Saudi patients cannot seek information due to lack of access. He attributes this to fewer available outlets than in countries like the United States. To be fair, I reminded him that the Web is accessible to all, not just Americans. He chuckled and said ‘Perhaps … If you can read in English.’
When asked overall how information literacy could be increased in Saudi health care, he suggested that the entire system be overhauled. He contends that the Government spends too much money for poor quality. ‘We [Saudi Arabia] need to make it more competitive: you get nothing for nothing.’
He is not against ensuring that all people receive health care, but views the current Saudi system as a ‘free ride for administrators’ at the expense of patients and practitioners. Although patients do not have to pay money, they pay as a result of lack of information and low-quality treatment. If practitioners and administrators were forced to compete with other hospitals, then he believes that information literacy would improve, and so too health care. ‘You cannot separate the two: without information, you cannot provide good health care.’ He claims there is little information literacy opportunity for Saudi Arabian citizens within the healthcare sector: ‘You can take it or leave it. Either way, they [hospitals] will get subsidized. There is no research that a patient can do.’
Practitioner as seeker
Both primary and secondary research is pivotal to a healthcare practitioner’s work. I include here both theoretical research and active care under primary research. A theoretical example would be a surgeon experimenting with stem cells to try and find a cure for Parkinson’s disease. An active care example would be a general practitioner who administers yearly examinations to his or her patients and develops patient profiles.
Secondary research allows practitioners to go beyond their laboratories and clinics. Many hospitals have their own libraries to help keep them current with the latest medical findings. Due to the amount of research conducted, it would be irresponsible for a practitioner not to read medical journals or attend conferences. Staying current with secondary information, however, is daunting as there is so much published: Parboosingh described Canada’s Maintenance of Competence, a program designed to assist physicians and surgeons with recognizing when and how to use information. He contends that the knowledge base is too vast for practitioners to manage. Two particular dilemmas are what to memorize and what to pass along to colleagues.1
Whereas Parboosingh’s obstacle is more Analyze/Use, Apalayine and Ehikhamenor described Locate obstacles for Ghana health care:
‘We note a loose and uncoordinated web of information channels that include fellow workers, chiefs and local heads of communities, courses, workshops, seminars, meetings, radio programmes, journals, newsletters and, least of all, libraries. Problems associated with obtaining information have been highlighted. A highly coordinated plan for an information service that takes into consideration these information channels is absolutely necessary for the success of the primary health care programme.’2
The challenge to process all the latest findings is easy to appreciate, no matter what sector, due to the Information Explosion. The reason a practitioner allows this to be a challenge is based on a sincere desire to best serve patients: if the practitioner did not care, then he or she would not concern him/herself. However, there are also liability concerns: if a practitioner’s failing of a patient is attributed to lack of knowledge, it is grounds for a lawsuit and/or lost prestige.
Practitioner as provider
Should practitioners provide information to patients with a Use expectation? To many, the answer might appear to be ‘yes’, but consideration should also be given to Analyze. Practitioners as information literacy providers can be very useful to patient well-being, especially regarding preventative care. For example, a person diagnosed as HIV-positive should be given all the information necessary to counter the onset of AIDS and avoid its spread. Doing so requires vast amounts of information concerning daily lifestyles that only a healthcare practitioner fully understands.
However, there is a difference between lifestyle and course of action Use. With lifestyle, the practitioner cannot force the patient to follow what is best (aside from power of attorney or other legal procedures); they are unable to completely monitor the patient outside of the healthcare facility. The best the practitioner can do is provide the information and periodically monitor the patient’s progress.
The difference with course of action (e.g. surgery, prescriptions) is that the practitioner performs, not the patient. The practitioner has better credentials to make informed decisions, and thus the responsibility should be theirs. He or she can provide information to the patient and relevant family members about what will happen, and can provide information before and after any procedure to support the procedures applied. Otherwise, it is not a matter of being an information provider, but making a decision and providing treatment. Anything other is not patient empowerment, but shirking professional responsibility.
Another information issue is timeliness, not only among practitioners themselves, but also with their patients. There has to be a system within a healthcare facility that ensures timely delivery of information. Additionally, there should be real effort to provide information to patients, both inside and outside the facility. With mammograms, for example, practitioners understand the importance of these procedures for women, and do not take chances when something is detected. However, such detection, no matter how minor it might turn out to be, causes significant stress for the woman and her family. As soon as analysis of the mammogram is complete, the results, positive or negative, should be shared with the patient, not in a couple weeks, nor even a couple of days: as soon as possible.
Secondary information is also important, and can be shared within offices, hospitals or professional networks. Doctors attend conferences, and formally and informally share information about new procedures and experiences. There are also a wealth of medical journals and books by and for doctors. More recently the Web has become a large part of healthcare information literacy: many doctors have their own websites, and reputable associations and societies also develop websites that provide valuable information for practitioners and patients.
Interview with a Japanese nurse: Miyoko (translated by Sanae Takagi Lombard)
Miyoko provides health care in a medium-sized hospital in Tokyo. She has over 30 years of nursing experience, and appreciates the importance of information to health care. She chose nursing as a profession because it offers different challenges on a daily basis. Plus, the stakes are meaningful: ‘Dealing with the most important thing … Life.’ However, in retrospect, she is not pleased with her career choice, and I believe that a lot of her displeasure stems from information literacy obstacles.
Her definition of information is ‘… knowledge for making a decision or action’. Although she was unfamiliar with the phrase ‘information literacy’ she certainly appreciates its components and healthcare implications: ‘Information is very important. How it is used can be the difference between life and death.’
Miyoko finds the major obstacle to be patients as providers of personal information. She described a case in which a patient was neither forthcoming nor honest about his background, and thus the diagnostic tests performed did not equate with what he provided. She believes this damaged his overall recovery. Although he survived, she considers the case a failure, and attributes it to breakdowns in all four information literacy components. Time was a factor. Eventually she Located the information she needed; however, she did not have time to apply Analyze and Use to the patient’s best advantage. She believes that patients have a responsibility to provide all pertinent information to their practitioners, and holds them as accountable as their practitioners in the information literacy process.
In addition to providing information, Miyoko believes that patients need to seek it, more for choosing practitioners than practicing on themselves. ‘Patients decide to choose their health care in Japan. Health care can’t choose patients.’ For this reason, she recommends that they seek as much information as possible about potential practitioners and facilities, and make an informed decision about who they will visit.
To these ends, Miyoko views the Internet as a boon to patients in ‘asserting their own rights’ when it comes to information literacy. However, it can also be an obstacle: ‘It is a problem that important information which could save someone’s life can be confused with the wrong information spread on the Internet.’ Although she believes in a patient’s responsibility to Analyze, some information is too confusing or specialized for a layperson to comprehend. Combine this with false information and serious problems can arise. She believes practitioners should create opportunities to inform patients and each other about health care, while closely evaluating it, both on the Internet and in the hospital. ‘Of course, it is easier said than done, especially since practitioners already have very busy schedules.’
Miyoko thinks the Internet has potential to help patients and practitioners facilitate information literacy, but that mechanisms must be in place to monitor quality. She believes this is where hospital administrators can best serve: becoming the facilitators of healthcare information literacy. She thinks more time and money needs to be directed towards this, and that policy needs to be adjusted so that practitioners can give patients as much information as possible. She sees this not only as a major opportunity for administrators to contribute, but ultimately as their responsibility.
Miyoko believes that connecting information literacy to health care is a huge priority, and will be given more weight in the future. Although administrators do not practice, she believes that information literacy is dependent on administration. She cites their management and finance abilities as the most important factor to future information literacy in terms of creating more access and training. However, she also thinks that patients need to adjust their perceptions: ‘They expect health care to do a better job. They think they are customers to buy healthcare service. It affects healthcare quality.’
In other words, she believes that patients need to be more serious about their role in the information literacy relationship: this means being informed rather than expecting the healthcare sector to educate them. To paraphrase: ‘The quality of health care in Japan is lower than before. Recently, there have been badly behaving patients who have no common sense. They need common sense and patients and health care must trust each other.’
Administrator as seeker
There are several different healthcare administration models: from the single-person general practise (the one person being administrator, doctor, nurse, accountant, secretary and janitor) to huge hospitals that have boards of trustees, several departments and a variety of personnel. Whereas the United States has private health care, countries such as Saudi Arabia and Japan are state-supported; the latter brings government bureaucracy into administration, for better or worse (according to our Saudi patient, worse, but there are plenty of Americans who would gladly take it).
Administrators handle the ‘business’ aspect of health care. They often do not practice medicine, but do determine how and to what extent it will be provided. As seekers, they should understand the laws and standards of the jurisdictions in which they administer, be aware of innovative strategies for running healthcare facilities and understand the culture of the community they serve. This involves both primary (e.g. patient surveys, personnel evaluations) and secondary research (e.g. attending conferences, reading journals).
One area in particular that requires information literacy is interaction with auxiliary industries, especially medical technology and pharmaceuticals. These are commercial companies that are not obligated to approach their work under the Hippocratic Oath. Administrators must undertake careful research on such groups, and make sure they are reputable in addition to determining feasibility and relevance of the products they sell (practitioners should be heavily involved in making such decisions). Additionally, they should consider the training and support the companies provide after sale. If administrators fail to achieve information literacy in these pursuits, then they prime their practitioners for failure and endanger patients. Here again, primary and secondary research should be undertaken, and depending upon the technology or drugs, understanding of a broad range of disciplines outside of health care might be necessary (e.g. engineering, computer science, chemistry).
Although most developed countries other than the United States have state-supported healthcare systems, thus making insurance less of an issue, many patients, like the Saudi patient discussed earlier, are unhappy with their systems. Consequently, if there is a push for private care, then insurance might become the healthcare issue elsewhere in the world that it currently is in the United States. It offers a unique set of dilemmas for administrators. Some questions are: what insurance should they accept? Should they deny care to patients who do not have approved coverage? Should they become more involved in coverage issues between patients and insurance companies? Administrative answers to these questions can be the difference between whether or not a patient receives care, and, if so, then whether or not he or she will bankrupt themselves receiving it. Again, it is important to undertake primary research (e.g. compare rates, identify the main companies in the operating jurisdiction, evaluate client support) but also secondary research (e.g. learning what other administrators have experienced).
Administrator as provider
Administrators are direct providers of information and are information literacy facilitators. The most important way they facilitate is through policy development. Personnel and patient policies and procedures should be clear and accessible. This involves creating effective handbooks, personnel training, and coordination of time, space and money. In so doing, some of the information literacy obstacles Parboosingh and Apalayine/Ehikhamenor described can be reduced.
Both high- and low-level administrators should be involved in facilitation: secretaries, custodians, cafeteria personnel, volunteers – to effectively do their jobs, they must all be seekers and providers. They cannot always wait for high-level administrators to directly provide or instruct how to Use; information they provide to practitioners must be accurate to ensure adequate care. For example, if there is a new procedure for disposing of needles, then custodial services must inform nurses and orderlies on how to avoid biohazards. Effective administrators will facilitate such information literacy with safe procedures that support the policies.
Not only do administrators provide information amongst themselves and practitioners, they can directly provide it to patients. Some hospitals provide open-access libraries and librarians who provide information to current and prospective patients. Another example is billing: aside from state- supported costs, are there extra costs for which the patient is responsible? If so, then finance personnel should provide this information accurately and clearly to prevent any unpleasant surprises. Finance information is particularly a problem in a private-care environment like the United States. In addition to projected costs covered by insurance, there might be unexpected procedures that need to be done that are uncovered. Hospitals must be clear about this, and try to forewarn patients of risks.
Interview with an American hospital administrator: Renae Hayes
Ms Hayes is the Director of Physician Relations at Hamot Hospital in Erie, Pennsylvania. She is a Registered Nurse, but made the move to administration five years ago upon the request of doctors and administrators. ‘They decided they needed me more in this capacity.’ Although the roles are different, for her their goals are the same: ‘I got into health care because I have a passion for the human being; helping folks get better is what I do.’
According to Ms Hayes, information is ‘data that helps the user’. She applies this meaning to all healthcare roles, including patients. Although she works primarily with doctors, it is patients who she ultimately serves, especially in terms of information literacy. She views administrators as the major facilitators of it in health care. ‘Hamot is big on it; they require broad educational information and use skills.’ An example she shared was an informatics class in which she had been enrolled. It focussed on information literacy in hospitals, along with evaluating secondary information on the Web.
Ms Hayes contends that the biggest information literacy obstacles occur between departments. Although accommodation of the four infomation literacy components is necessary, she believes that without good coordination and communication it cannot happen – this is where leadership is needed: ‘You must be a good leader … inspire all involved to better utilize resources.’ When a mistake happens, an administrator must ‘present information in a way without blame’.
Ms Hayes believes that information literacy will be a bigger healthcare concern in the future, especially in the United States in lieu of the reforms that President Obama is initiating. ‘People need details to make best decisions … systems, options, all of it.’ She thinks that administrators will need continued leadership, organization and communication training to facilitate information literacy. ‘I need to ask “who am I talking too? Doctor, patient, janitor?”.’ Understanding the person’s role and limitations will be key to providing him or her with the appropriate means to become information literate.
Issues
Patient information
It is important that detailed records be kept on patients and that all involved in their care have access. However, too much access to too many can cause problems. For example, the United States Federal Trade Commission estimated that recently 3 per cent of identity theft cases were initiated through medical records.3 Our Saudi patient described his concerns that patient information is collected and used for the wrong reasons. Below is another example of how this can be a problem. A male patient with bipolar disorder needs a job. If his psychiatric records are exposed, then he could lose job opportunities. Some employers might fear that his behavior could jeopardize the work environment, even if his records indicate that he is well adjusted and disciplined in his treatment for the disease.
Problems can arise depending on how the information is provided and used. In the United States, insurance companies already use patient information for billing, but they also use it to screen applications. Based on a prospective patient’s information, insurers decide how much or little coverage to extend, and at what premiums. If they do accept patients, then they provide them with listings of practitioners they may see, for which conditions and under what circumstances. Without information, they cannot effectively evaluate how much coverage to provide. If they miscalculate (e.g. provide unlimited medical insurance to a newly diagnosed cancer patient), then they will go out of business unless they boost the rates for healthier clients. However, should the private sector determine how much or how little health care patients receive? Should this be done by the State? If neither, then who should have access and make such decisions?
Too much information?
It may sound ridiculous to penalize practitioners for providing information. In fact, one of the fears some patients have, such as our Saudi patient here, is that practitioners do not provide enough information. How much is enough, though, and how much is too much?
It appears that some practitioners try to avoid responsibility by leaving choices to patients. Instead of making a decision, they give patients information to make decisions (i.e. Use) themselves. The problem is that most patients do not have the necessary credentials to Analyze the information involved. Such lack of context makes information literacy impossible to achieve for a course of action decision. Providing information to satisfy a patient’s Identify and Locate components is reasonable, but leaving patients to Analyze and Use is not.
This is an information literacy conundrum: should practitioners be responsible for the level of literacy they help a seeker attain? For example, a man steps on a rusty nail. The practitioner informs him that he has a 25 per cent chance of bone infection. However, if the practitioner thoroughly cleans the wound, the odds decrease to 10 per cent. The practitioner finishes with ‘thoroughly cleaning it will really hurt and take a lot of time, and there is still no guarantee that it won’t get infected: what do you want to do?’
I think this is an example of a practitioner placing unreasonable Use burden on the patient. The patient does not fully understand the details that lead to the proposition, including the practitioner’s skill and inclination to do the job (if these are high, it can probably be less painful). The practitioner clearly needs to make the decision here, and simply inform the patient why. What if it is more serious than stepping on a nail? If it is a matter of the patient having as good quality of life as possible, the practitioner should make the decision.
Medical librarians
Should medical librarians have medical degrees or licenses? Similar questions are asked anywhere there are special collection librarians (e.g. should law librarians be lawyers?). Ordinarily, I would say that it is unnecessary for a librarian to have a particular degree to work in a specialist library. I think a competent librarian can provide access and service no matter what collection he or she administers. However, health care is different. The stakes are much higher, time is an issue, the level of jargon is high, and there is much interconnectedness within the literature and its application that is best facilitated by a person with a healthcare background.
When possible, I think a medical librarian should have some sort of healthcare background. [Good luck finding a person with both an MD and MLS who will choose librarianship over medicine.] Although I think it is more reasonable to require people with both medical and library training to administer healthcare collections than other specialist collections, it is also less realistic: we may live in an Information Age, but the bottom line still dictates employment supply and demand, no matter what age, and healthcare professions are generally more lucrative than others.
All things considered, in a choice between a doctor and a librarian, I would choose the librarian to administer a medical library. Therefore, although I do think it preferable that librarians have medical degrees, having a librarian and a healthcare library is better than nothing.
Tips
For the practitioner
Distinguish between preventative care and course of action care in relation to information literacy facilitation. It is good bedside manner to respect the intelligence of patients, but irresponsible to allow them to be too engaged in the information literacy process when it comes to health care (i.e. Analyze and Use).
1.Bruce, Christine & Candy, Phillip C. (2000) Information Literacy Around the World: Advances in Programs and Research. Wagga Wagga, NSW: Centre for Information Studies, Charles Sturt University.
2.Apalayine, Gamel B. & Ehikhamenor, Fabian A. (1996) The information needs and sources of primary health care workers in the Upper East Region of Ghana. Journal of Information Science 22:5, 367–73.
3.Larkin, Erik (2009) Identity thieves target medical records. PC World 27:8, 49.