Final Medical Guideline Paper

TRAVELER’S SUMMER RESEARCH FELLOWSHIP PROGRAM 2014 WEILL CORNELL MEDICAL COLLEGE, NEW YORK, NY

Identifying Issues in Medical Guidelines to

Improve Decision-‐Making Sumaiya N. Sarawat

Correspondence: Sumaiya N. Sarawat, City University of New York – Brooklyn College, 2900 Bedford Ave., Brooklyn, NY 11210, Email: [email protected]. Tel. 347-458-8385.

Conflicts of Interest: None

Financial Disclosure: None

Word count: 3,349

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Figures:

Tables:

8 8 7 7 7 7

6 5

4 4 4 4 3 3 3

2 1

0 1 2 3 4 5 6 7 8 9

Total Score For Each Inde

x

Variables of Quality

Table 2: Common A?ributes Among Medical Guidelines

44.44%

33.33%

22.22%

Table 3: CharacterisDcs of Sites

Contains guideline ar;cles

Contains symptoms feature

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Tables of Contents: Abstract…………………………………………………………………………………………………….2 Introduction……………………………………………………………..…………………………………3 Methods………………………………………………………………………………….…………………5 Variables…………………………………………………………………………………………………...6 Statistical Analysis………………………………………………………………………………………...7 Results……………………………………………………………………………………………………...7 Analysis…………………………………………………………………………………………………...10 Discussion……………................................................................................................................................10 Conclusion………………………………………………………………………………………………...13 References………………………………………………….......................................................................14

Many physicians and health care providers rely on scientific scholarly literature when it comes to treating patients in addition to their experience and knowledge. Medical guidelines, also known as clinical protocol guidelines, clinical protocols, clinical practice guidelines, or clinical guidelines, are documents whose purpose is to educate physicians and patients on making the best informed decisions and requirements regarding diagnoses, treatments, recommendations, and managements for multiple aspects of healthcare. There are various problems with the online guidelines that deter patients from utilizing them. These problems include: the lack of accessibility, ease of site navigation, excessive information, too much medical jargon, and the lack of website attraction. Guideline development is improved when diverse stakeholders, including patients, specialists, and experts, share power in the process, from defining the scope of the question to the final stages of review. The Institute of Medicine (IOM) and Guidelines International Network (G-‐I-‐N) have each released best-‐practice standards for clinical guidelines that place health care consumers at the forefront of guideline development. The AAO-‐HNSF has placed a growing emphasis on consumer engagement in its latest guideline development manual and has developed clear, multifaceted infrastructural approaches to identify and utilize consumers in guideline development and guideline review. These article reviews those recommendations and emphasizes that patient-‐centered guideline development can improve the quality and impact of medical guidelines. The hypothesis for this project states by modifying online guidelines to become patient-‐centered, the hope is to gravitate a larger patient populace to begin using these websites to become more willing to be well informed about their health. Using data collected from the multiple websites on the internet, a Microsoft Excel spreadsheet was created to analyze the trends and compare the different features of medical guidelines on the web. The data sources that were used were numerous medical guideline websites suggested, known prior due to experience, and also found through internet research. An index of quality was developed to measure the effective of each website used. At the end of each website row, the numbers were auto summed into a total score. An index score, which is the sum of all parts, were used to rank the websites from having the highest score to the lowest score. The spreadsheet was then sorted so the websites were ordered in the descending direction – the medical guideline with the highest score was placed on top of the spreadsheet. It is crucial for online guidelines to alter their websites to manifest websites that are accessible, comprehendible, and user friendly in order to perpetuate the best health care for patients.

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INTRODUCTION:

Medical guidelines are documents and published papers whose purpose is to educate patients and

doctors into making the best-informed decisions and requirements regarding diagnoses,

treatments, and management for multiple aspects of health care.1 Medical guidelines are also

called clinical protocol guidelines, clinical protocols, or clinical guidelines. There are many well-

known medical guideline websites. For instance, there is the National Guideline Clearinghouse

and the American College of Physicians Clinical Practice Guidelines. Alongside guidelines there

are also websites with a function to relay treatments, diagnoses, risk factors, etc. once symptoms

are entered into the site.2 These well-known sites include TheNNT, WebMD, and Mayo Clinic.

All these sites provide recommendations on what a person should be doing with the symptoms

each individual provides. Certain sites have a function specifically geared to provide

recommendations such as appropriate tests, vaccinations, check-ups suggested to patients of a

certain gender or age group. The most common websites to view these recommendations are

HealthFinder and Agency for Healthcare Research and Quality (AHRQ).

Although these guidelines hold purpose their main objective gets lost through the conundrum the

online guideline websites bring. The predicament that surfaces regarding guidelines revolves

around accessibility, navigation, credibility, excessive information and lack of attraction. These

hindrances lead to the lack of knowledge encompassing health. This manifests uneducated

patients, which further impels poor health conditions among this populace. The knowledge 1 Clinical Practice Guidelines We Can Trust - Institute of Medicine. (n.d.). Clinical Practice Guidelines We Can Trust - Institute of Medicine. Retrieved August 4, 2014, from http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust.aspx 2 Medical Guideline. (n.d.). healthinformatics -. Retrieved August 4, 2014, from http://healthinformatics.wikispaces.com/Medical+Guideline

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gained by these guidelines has the ability to prevent certain illnesses from occurring and cures

others rapidly. However, if one does not have the ability to comprehend the material given, how

can they use these guidelines to benefit them? The incompetence of guidelines ignites a breach in

ethical practices. The autonomy of a patient can be compromised if they are not aware and fully

educated about their health and by not providing proper guidelines to patients we ensue non-

malfeasance. Most guidelines are set up for doctors and individuals with a medical background

to gain access to. Therefore, these guidelines are orchestrated in a manner that are on a level that

only individuals with a certain mental capacity would be able to understand. The layouts are

structured as medical school textbooks; they are monotonous, not vibrant and verbose. In terms

of excessive information, options, of which procedure or protocol to follow lay infinite, which

only further confuses the patient. It is essential for not only doctors and health professionals to be

aware of medical procedures but the patients themselves.3 Bestowing patients with knowledge of

their health and preventative medicines or cures as a whole may decrease a number of ailments

from occurring. This would also decrease the number of visits to the hospital or trips to the ER,

which in turn is cost effective. Creating patient centered guidelines can serve as a tool for

patients and allow them to ask for certain checkups that may be overlooked by the physician.

Essentially, a health guideline is an imperative instrument for all individuals to utilize because it

educates one on how to live and lead a healthy lifestyle. Not all individuals have access to this

information but by presenting information in a clear coherent manner the general public can be

well informed about potential health risk, benefits, and procedures that could augment their

3 Standards for Developing Trustworthy Clinical Practice Guidelines - Institute of Medicine. (2011, March 23). Standards for Developing Trustworthy Clinical Practice Guidelines - Institute of Medicine. Retrieved August 8, 2014, from http://www.iom.edu/Activities/Quality/ClinicPracGuide.aspx

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physical condition. However, the only way for this to be implemented is if the online guidelines

are modified in a way that is patient-centered. The big questions that are yearning for answers

remain (1) Are there online guidelines that are user friendly and if so which ones? (2) Is there a

way to construct an alternative site that could potentially reinvent the way guidelines are

perceived? (3) Will modifying sites help increase patient understanding of guidelines and

encourage them to use these websites for personal health benefits? (4) Will this increase in

knowledge due to sufficient knowledge augment patient’s health as a whole?

METHODS

Design, Data Source, and Sample

Using data collected from the multiple websites on the internet, a Microsoft Excel spreadsheet

was created to analyze the trends and compare the different features of medical guidelines on the

web. The data sources that were used were numerous medical guideline websites suggested,

known prior due to experience, and also found through internet research. These sites include:

TheNNT, WebMD, the Mayo Clinic, Health Finder, AHRQ’s (Agency for Healthcare Research,

and Quality), Electronic Preventive Services Selector (ePSS), National Guideline Clearinghouse,

U.S. Preventive Services Task Force, PubMed, and American College of Physicians. TheNNT,

National Guideline Clearinghouse, American College of Physicians, and the U.S. Preventive

Services Task Force were suggested websites recommended by Dr. Tara F. Bishop, a research

instructor. Data was originally compiled using those four websites by analyzing the benefits and

disadvantages of each site and comparing each other through a pros/cons table on a Microsoft

Word document. After the compilations, an Excel spreadsheet was created using those four sites

in an attempt to see the comparisons against each site and to receive a more quantitative data set

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as opposed to a qualitative data set. The sites were then ranked by a point system and ordered in

a trajectory.

A sample of medical guideline websites was taken from the vast population of clinical

guidelines on the World Wide Web. The original four sites were recommended as a good place

to start the research and the other sites were gathered as the data progressed. Health Finder

offered an option for people to receive health recommendations depending on their age, gender,

and pregnancy status. AHRQ’s ePSS also has a similar feature but with two added options, one

for being a tobacco user and the other for being sexually active. Both Health Finder and AHRQ’s

ePSS were found along the side of the U.S. Preventive Services Task Force website. This is a

crucial feature for sites to contain since it allows patients to make informed decisions about their

health from recommendations based on their lifestyles. This is why these two sites were included

to be a part of the sample sites. From personal experience, WebMD and the Mayo Clinic were

popular medical sites patients know to refer to when they experience symptoms that might be

explained by certain conditions. An option to list specific symptoms an individual may be

experiencing is a good tool to have on a website so patients can know what to expect before

going to a doctor. This is why these two sites were also included to be part of the sample

websites. PubMed is a classic site students and professionals visit to search research articles. The

free public version of PubMed contains all the abstracts of articles and some full text articles.

This is helpful for people to visit and read the latest scholarly articles in various conditions,

which was why PubMed was added to the sample data websites as well.

Variables

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The list of the medical guideline websites used was organized on the farthest left hand column on

a Microsoft Excel spreadsheet (“A” column – cells A2:A10). An index of quality was developed

to measure the effective of each website used. The variables of quality were listed through the

first row (B1:R1). The seventeen variables are as follows: organization, navigation, no excessive

information, summary option, tutorials, advanced search, detail, user friendly, medical layout,

disease likelihood, symptoms viewer, review option, color codes, recommendations,

methodology, public access, and effectiveness of symptoms. The variables were defined to have

a yes/no option. In order to rank the medical guideline websites quantitatively, numbers had to

be assigned through the dichotomous scale indicating a ‘1’ to be ‘yes’ and a ‘0’ to be ‘no’. A

score of ‘1’ would indicate that that specific medical guideline has that variable within its

website while a ‘0’ would indicate that that guideline is lacking that variable in its site.

Statistical Analysis

At the end of each website row, the numbers were auto summed into a total score. An index

score, which is the sum of all parts, were used to rank the websites from having the highest score

to the lowest score. The spreadsheet was then sorted so the websites were ordered in a

descending direction – the medical guideline with the highest score was placed on top of the

spreadsheet.

RESULTS

Nine websites were found and the characteristics of the sites are as follows. Four out of the nine

sites include actual scholarly medical guidelines so approximately 44.44% of the websites

contain articles for readers to view. Three out of the nine websites (33.33%) contain a feature

where patients can list or point out their respective symptoms in order to receive suggested

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diagnoses and treatments. Although all the websites used had areas of recommendations for the

respective searches, only two out of the nine sites (22.22%) offered recommendations

specifically based on one’s age, gender, and lifestyle (Table 3).

TheNNT, WebMD, and AHRQ’s ePSS were tied for the highest, having a score of 11 so these

websites contained most of the variables. TheNNT is the only website included in the samples

that contained color-coding for different features on the site. American College of Physicians

was shown to have the lowest score of 6 which indicates that the specific website does not

contain more than half (64.71%) of the variables used to measure effectiveness of medical

websites. The Mayo Clinic and Health Finder were tied in the rankings with a total score of 10,

and the National Guideline Clearinghouse, the U.S Preventive Services Task Force and PubMed

were tied in the rankings with a score of 8 (Table 1 & 2). It is important to note that although

some websites have the same score, it does not mean that they contain ‘1’s for the same

variables. They can have different options in each respective website, for example one site can

have a specific variable while another site lacks that variable but it can make up the score by

having a different variable.

Table 1: Table 2: Results Table

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ANALYSIS:

8 8

7 7 7 7

6

5

4 4 4 4

3 3 3

2

1

0

1

2

3

4

5

6

7

8

9

Total Score For Each Inde

x

Variables of Quality

Table 2: Common A?ributes Among Medical Guidelines

44.44%

33.33%

22.22%

Table 3: CharacterisDcs of Sites

Contains guideline ar;cles

Contains symptoms feature

Contains recommenda;ons based on lifestyle

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When analyzing each website and categorizing which website deserved a higher ranking than the

other, key elements were looked upon to arrive to a conclusion. The ones ranked highest were

the most coherent, accessible and easy to navigate. The lowest ranked were those who

demonstrated the opposite characteristics. Finding websites that were average amongst the list

concluded the mean. The information was qualitative. The ranking order followed as so: which

guideline websites stand out in the categories of: organization, navigation, non-excessive,

summary option, tutorials, advanced search, detailed, user friendly, medical layout, disease

likelihood, symptoms viewer, review option, color codes, recommendations, methodology,

public access, effectiveness of treatment. The highest ranked was TheNNT, WebMD, and

AHRQ’s ePSS and the lowest ranked was American College of Physicians.

DISCUSSION:

Starting the opening of the millennium, the World Wide Web became accessible to the general

public. As the Internet was brought into the homes of many individuals, the world became much

easier to navigate and simple questions were answered quickly as the Internet advanced

progressively to include more search engines. Now people the have the ability to look up

anything from the weather to treatments to their various illnesses. In this day and age, many

people do not rush straight to the doctor’s office.4 Instead, many patients can easily type their

symptoms into numerous medical websites and receive close to accurate treatment and diagnosis

results within seconds without having to leave their homes.

4 Standards for Systematic Reviews of Comparative Effectiveness Research. (2011, March 23). Institute of Medicine of the national academics . Retrieved August 5, 2014, from http://www.iom.edu/Activities/Quality/SystemReviewCER.aspx

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An issue arises when the question of whether or not everyone really has access to these

resources. With almost six million New Yorkers dependent on Medicaid, there is a good portion

of the population who barely has any money for food and shelter, much less internet access. A

good portion of the population, such as many immigrants, may be illiterate and unable to

understand the language the guidelines are written in. This can cause a barrier in gaining crucial

information through the web. There is a good chance that these percentages of the population are

unaware of the free online resources available to help them figure out what may be wrong with

their health and whether or not if it is severe enough to make a trip to the doctor’s office.

However when individuals do discover free online medical resources, patients may become

skeptical of how credible the Internet is versus face-to-face interaction between the patient and

the doctor.

The ability to navigate through these websites is another impetus for the lack of affectivity of

online medical guidelines for patients. The patient is already perplexed and desires a simple

solution to their burning question. They don’t want to get onto a website and see clutter. The way

many of these online medical journals are set up mirrors a medical textbook or journal. The

colors and layout are mundane and the language wordy, their purpose is to educate those with a

medical background. However, many patients don’t necessarily have an understanding of

medicine and that may be the sole reason they are searching for a guideline in the first place. All

the medical jargon again daunts patients into not being informed about their health.

Another problem we face is the issue of excessive information. The amount of data the Internet

holds is quite vast. This notion is akin to online medical guidelines. Almost all medical

guidelines provide the patient with an abundance of alternatives, options, and information. This

overload of facts and guidance deters the patient from actually understanding or choosing which

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guideline is not only most credible but the right fit for them. The deliberation between which

source is the right source drives a wedge in the ability of the patient to trust a certain guideline

over the other. When they are so many different guidelines giving several different protocols

regarding one procedure the patient becomes alarmed and does not know which is the right one.

This uncertainty propels the patient to be misinformed about his or her own health.

There is no clear-cut answer but the best solution may be modifying the way these websites are

being presented to the general public. The websites should display an inviting layout, with colors

that would attract and not frighten a patient. It shouldn’t be verbose and instead dissect all the

medical jargon into layman’s terms. Instead of providing infinite guidelines to one question or

concern, the website should implement the top three. These websites providing guidelines should

help the patients understand their health not further confuse them.

With so many individuals dependent on Medicaid as aforementioned before and several

Americans that are undocumented and living without health insurance it is crucial to educate

these patients about their health. These patients have various reasons that impede their ability to

go seek proper medical care. Going to the doctor’s office for routine check-ups is often not first

on their priority list due to transportation potentially being an issue. Making an appointment with

the doctor might mean missing a day of work and one day’s worth of pay is more important than

getting routine check-ups for some families.

CONCLUSION:

Guidelines are more imperative than many believe. Not only do they serve as a mini check up for

those who do not have the means or face impediments in going to see the doctor but they serve

as an educational tool as well. In order to not breach autonomy it is imperative to make sure that

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patients are well informed enough to make a medical decision for themselves. By having a sound

knowledge of their health, patients will feel less inept to discuss their medical issues and make

choices that will benefit them. They will question the care of the doctor less and instead work

with the doctor to find an answer. Therefore, it is crucial for online guidelines to alter their

websites to manifest websites that are accessible, comprehendible, and user friendly in order to

perpetuate the best health care for patients.

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References:

1. Clinical Practice Guidelines We Can Trust - Institute of Medicine. (n.d.). Clinical Practice Guidelines We Can Trust - Institute of Medicine. Retrieved August 4, 2014, from http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust.aspx

2. Medical Guideline. (n.d.). healthinformatics -. Retrieved August 4, 2014, from

http://healthinformatics.wikispaces.com/Medical+Guideline

3. Standards for Developing Trustworthy Clinical Practice Guidelines - Institute of Medicine. (2011, March 23). Standards for Developing Trustworthy Clinical Practice Guidelines - Institute of Medicine. Retrieved August 8, 2014, from http://www.iom.edu/Activities/Quality/ClinicPracGuide.aspx

4. Standards for Systematic Reviews of Comparative Effectiveness Research. (2011, March

23). Institute of Medicine of the national academics . Retrieved August 5, 2014, from http://www.iom.edu/Activities/Quality/SystemReviewCER.aspx

Final Medical Guideline Paper

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Transcript of Final Medical Guideline Paper