When Mr and Mrs Shukla’s child was diagnosed with ‘Down’s syndrome’, they wanted all possible information on the illness. Endless hours of searching on Google provided little useful information, driving them to frustration. On a friend’s advice, they visited a consumer health library. There, a helpful and informed librarian scanned through the catalog and gave them a list of popular books on the subject, many of which were written by parents of children of Down’s syndrome. In today’s high-tech age, visiting a library was the Shuklas’ last resort. However, it clearly ended up being the best one.
‘Information Therapy is the prescription of the right information, to the right person, at the right time to help make a better health decision.’ This simple definition of Information Therapy raises many questions. How can information have therapeutic effects? What do we mean by ‘the right information’? Isn’t every person who needs health information a ‘right person’? And is there a ‘right time’ to provide health information? Isn’t now as good as any time? This chapter will explain how a medical (or health sciences) librarian can help in the provision of the right information to the right person at the right time.
The problem with information and information delivery
Health-related information is useful if it is available to us in the right doses at the right time, but only if it is authentic and beneficial. The problem is that very often – and alarmingly so – the information we get is inaccurate. In such cases, the information can be actually harmful, rather than being helpful. It may be the result of wrong research. It maybe outdated. It may be too complicated for us to understand. It may not be available unless we are ready to pay a substantial fee. And sometimes we simply do not get information because our healthcare providers forget to tell us some facts or instructions. This could happen due to human factors like their overly busy schedule, or they may assume that we already know these facts.
A simple example illustrates this:
A lady went to have a blood sugar test. A lab technician drew her blood when she was on an empty stomach. She was then told to eat and come after two hours. She went home, ate after an hour and came back within two hours of her first visit to the lab. A clearer instruction would have been, ‘Come back to give a sample two hours after you have eaten.’ For the technician, this was routine knowledge. Without realizing this , he had assumed that anyone who came for this test would know these facts. A simple handout for such patients would have made a big difference. In this case, luckily the patient herself had a doubt and gave the second blood sample after another hour.
Information Therapy and the role of a medical librarian
A medical librarian can add major value in providing Information Therapy. First, she will usually have a Master’s degree in ‘Library and Information Sciences’. During her training, a librarian learns a lot about the various types of information resources; the way information is structured and organized ; and how to search correctly , using structured techniques , to get the right information quickly . Librarians are information specialists – they know how to classify and retrieve information. During their training, they also learn how to evaluate the quality of the resource : is it comprehensive ? is it biased ? is it suitable for the reader ? They are trained to pick the best resources , based on the user’s query and needs. Because a librarian works with information resources daily , she specialises in ensuring that they are utilized optimally.
It is important to note that a medical librarian will not make a diagnosis or provide advice about a treatment – that’s the doctor’s job! Librarians will collaborate with doctors, to ensure that patients get the information they need. Patients should treat the librarian as a researcher on their medical team – and discuss the information they unearth with their doctors.
Librarians classify Information resources in several ways and it is a good idea to understand this.
By its contents:
• Basic resources – textbooks, dictionaries, telephone directories
• Research resources – journals – where research is published on an ongoing basis
• Analytical resources – where experts study all available research, analyze it (through a systematic process) and then synthesize it, presenting unbiased facts, evidence, and guidelines to help others to provide the right healthcare
By the format in which the information is published:
1. Primary resources – journal articles, original research papers
2. Secondary resources – Lists (or databases) that lead us to primary resources
3. Tertiary resources – Lists of lists or databases that lead us to all available secondary resources
By target audience:
Based on its utility to doctors, nurses, dieticians, consumers and patients
By medium of publication:
Print, offline electronic resources like CDs, and the Internet
Medical librarians ensure that the information that a patient or consumer seeks will be sourced from authentic and reliable resources. They will search every available resource as required and will contact other information professionals for additional help if required.
Examples of Information Therapy, and some specific experiences:
As a former librarian at HELP, I can share some examples of how we used Information Therapy to help patients.
• A young mother of an autistic child came to the library to know more about the condition. Our team of librarians was able to provide her with books, pamphlets and magazine articles in the library collection, because we had catalogued them in detail, through our library software. The mother was very grateful because the library had such an extensive collection and that we were able to get out everything in minutes for her. She mentioned that she got a lot of ‘day to day’ and ‘common sense’ information that would hold her in good stead when helping her child cope with autism.
• A lady brought her daughter-in-law who was pregnant. In Indian culture, it was uncommon for girls to proactively learn a lot about pregnancy and labour – especially about 15 years ago. The two sat in the private area reserved for viewing videos and watched one on pregnancy and labour. They were happy to have watched it and to us librarians, it appeared that their bond strengthened through this.
• A doctor called us, and told us that his wife had recently delivered a baby who had a rather rare condition, where a part of the brain was absent. In medical terms, this was known as ‘Agenesis of corpus callosum’. This happened when Internet access was in its early days in India. The doctor did not require medical information on the condition, but was keen on finding out how he could get in touch with other parents who had babies with a similar condition. We did a search and presented him with websites and also gave him the address of a ‘Support Group’ which offered more information and help to parents like him. He called us again in a few days and said that the Support Group had asked him if he would be a local resource in India and that he had happily agreed.
In each of these cases, the librarians helped patients with information that they would not have easily got from their doctors for several reasons. Providing this kind of information creates a positive virtuous cycle – and the doctor whom we helped has been able to help many more parents as well.
Specialized information provision
Librarians sometimes have to provide information on very specific queries that a patient may have. Examples are:
• Does the long term use of a particular drug cause cancer?
• A relatively new drug has caused adverse effects – is it really safe?
• Is it important to rest in bed or to continue to be active if you have back pain?
There are evidence-based sources of information that answer these queries. These sources are created by experts who continually research every available publication on the topic and publish the ‘evidence’, which are updated on a regular basis. There was a time when librarians answered such questions only if a doctor prescribed Information Therapy. Today, the trend has changed as there is now an increasing awareness of the ‘right to health information’. Librarians possess certain strong personal traits like maturity, empathy and a love of interacting with people. The skill to use these while providing the necessary privacy and confidentiality while delivering their services is something that every librarian must cultivate!
Why are librarians considered as ideal providers of Information Therapy?
• Librarians are helpful professionals and patients find it easier to ask them questions that they may forget to (or be reluctant to) ask their doctor, given the stress of the consultation and the paucity of time.
• They are trained to interview patrons for their information needs, so they can help them formulate their requirements correctly.
• They are objective and neutral because they do not have any vested interests in influencing the patient’s medical decisions.
The role of librarians is not restricted to helping only patients. Medical librarians are trained and experienced in conducting medical literature searches. They are often asked to locate a specific medical journal article by a doctor when he encounters a patient with a rare problem. Their expertise in drilling down and finding the most relevant references or information can often make a significant difference in the quality of medical care which a patient with a complex or rare problem will receive.
For instance, abstracts from most medical journals are published free online in PubMed - [www.pubmed.gov]. Doctors and patients can search the medical literature themselves, using this excellent resource. However, they often get lost and may not be able to find critically important information because they have not searched using the right keywords (MeSH terms – which are very special in PubMed). PubMed is a complex database, and the experience and expertise which a medical librarian can bring can make all the difference between a useful search and an exercise in futility.
With Google at our disposal, one might wonder whether we still need librarians and libraries. Contrary to popular belief, Google does not cover all the resources on the Internet. And not all information is available online – free or for a fee because a lot of high quality information is locked up in books ! Google searches the entire Internet, and since it’s not intelligent, often its search results contain unreliable and outdated information , which can harm rather than help. And of course a librarian can help you use Google itself to get better answers. If patients need in-depth answers and have got upset, frustrated and lost on the net (which is often the case), they are far more likely to appreciate the immense value which a librarian can add in holding their hand and helping them to find prescription quality information.
Sadly, medical librarians are an unappreciated and underutilised lot in India today, and we have failed to take advantage of their unique skill sets. In fact, in countries like the US, medical librarians accompany doctors on their rounds, so that the medical staff can make optimal use of medical journals and databases. Ideally, every hospital should have a consumer health library (which could be a part of the medical library) so that just as doctors send their patients to chemists, they can also refer them (or their relatives) to the library for Information Therapy.
Information Therapy is an integral part of the healthcare process. Doctors may not be able to explain every single detail to their patients. Instead of wasting time wading through information on the Internet (where a lot of it may be misleading), using a library’s resources (print and electronic access) and a librarian’s help can make a world of a difference to patients.
HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/
This will be held at Nehru Centre on Sunday, 9th October’11 from 10.30 am - 1.30 pm. Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.
On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.
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