The Wikipedia Health Landscape

Researching Health Conditions on Wikipedia

November 10th 2016

Introduction This is an update of a popular report (April 2014) on the use of Wikipedia to research health conditions by patients and doctors

alike

This report cited research showing how important Wikipedia is as a ‘go to’ reference to doctors and patients alike. While there are

an ever increasing range of health resources for patients and doctors, Wikipedia retains its dominance in its position in search

engine rankings and and number of views

So what if anything has changed in 2 ½ years?

Introduction

This report is divided into 2 parts

1. Analysis into the use of Wikipedia as a health information resource tool

2. An interview with the most influential editor

Part 1Wikipedia Health Analysis

The following slide outlines Average Daily Views (ADVs) across the original ‘Top 20’ list of most popularly viewed medical conditions.

The original list was kept for comparison reasons. This list may not be the exact current Top 20 highest ranked disease pages but

gives a good representation of user search and editor behavior

(It actually is not the Top 20 list as it was originally selected based on conditions that are commonly treated by pharmaceutical products. This is a nice list of all medical pages

including conditions. Not all are current thankfully – The Black Death still ranks highly…)

Most Popular Pages

Rank (2014) Rank Disease Average Daily Views Views 2014 Growth1 1 Bipolar 10112 9080 111%2 2 Schizophrenia 9642 8475 114%3 3 Crohns disease 8617 8145 106%4 4 Multiple Sclerosis 7882 7977 99%5 5 Diabetes 6102 6086 100%8 6 Alzheimers Disease 5263 4603 114%6 7 HIV 4905 4928 100%

10 8 ADHD 4838 4117 118%7 9 Hypertension 4526 4819 94%

13 10 Influenza 4031 3480 116%11 11 COPD 3993 3852 104%12 12 Rheumatoid Arthritis 3845 3762 102%9 13 Multiple Myeloma 3578 4301 83%

16 14 Epilepsy 3483 3147 111%14 15 Anxiety 3252 3460 94%17 16 Gastroesophageal Reflux Disease 3105 2844 109%15 17 Asthma 2906 3213 90%20 18 Depression 2781 2287 122%18 19 Breast Cancer 2386 2496 96%19 20 Cardiovascular Disease 1773 2311 77%

Average Views Per Day by Disease

Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016Note HIV is actually the virus and HIV/AIDS the medical condition. HIV is used here to be consistent with the original report

Rank (2014) Rank Disease Average Daily Views Views 2014 Growth1 1 Bipolar 10112 9080 111%2 2 Schizophrenia 9642 8475 114%3 3 Crohns disease 8617 8145 106%4 4 Multiple Sclerosis 7882 7977 99%5 5 Diabetes 6102 6086 100%8 6 Alzheimers Disease 5263 4603 114%6 7 HIV 4905 4928 100%

10 8 ADHD 4838 4117 118%7 9 Hypertension 4526 4819 94%

13 10 Influenza 4031 3480 116%11 11 COPD 3993 3852 104%12 12 Rheumatoid Arthritis 3845 3762 102%9 13 Multiple Myeloma 3578 4301 83%

16 14 Epilepsy 3483 3147 111%14 15 Anxiety 3252 3460 94%17 16 Gastroesophageal Reflux Disease 3105 2844 109%15 17 Asthma 2906 3213 90%20 18 Depression 2781 2287 122%18 19 Breast Cancer 2386 2496 96%19 20 Cardiovascular Disease 1773 2311 77%

Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016

The Top 5 conditions remain unchanged in the rank of their average daily views (those dropping in red and increasing in green)

Rank (2014) Rank Disease Average Daily Views Views 2014 Growth1 1 Bipolar 10112 9080 111%2 2 Schizophrenia 9642 8475 114%3 3 Crohns disease 8617 8145 106%4 4 Multiple Sclerosis 7882 7977 99%5 5 Diabetes 6102 6086 100%8 6 Alzheimers Disease 5263 4603 114%6 7 HIV 4905 4928 100%

10 8 ADHD 4838 4117 118%7 9 Hypertension 4526 4819 94%

13 10 Influenza 4031 3480 116%11 11 COPD 3993 3852 104%12 12 Rheumatoid Arthritis 3845 3762 102%9 13 Multiple Myeloma 3578 4301 83%

16 14 Epilepsy 3483 3147 111%14 15 Anxiety 3252 3460 94%17 16 Gastroesophageal Reflux Disease 3105 2844 109%15 17 Asthma 2906 3213 90%20 18 Depression 2781 2287 122%18 19 Breast Cancer 2386 2496 96%19 20 Cardiovascular Disease 1773 2311 77%

Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016

Average Daily Views (ADVs) are up overall 4% compared to 2 ½ years ago

Rank (2014) Rank Disease Average Daily Views Views 2014 Growth1 1 Bipolar 10112 9080 111%2 2 Schizophrenia 9642 8475 114%3 3 Crohns disease 8617 8145 106%4 4 Multiple Sclerosis 7882 7977 99%5 5 Diabetes 6102 6086 100%8 6 Alzheimers Disease 5263 4603 114%6 7 HIV 4905 4928 100%

10 8 ADHD 4838 4117 118%7 9 Hypertension 4526 4819 94%

13 10 Influenza 4031 3480 116%11 11 COPD 3993 3852 104%12 12 Rheumatoid Arthritis 3845 3762 102%9 13 Multiple Myeloma 3578 4301 83%

16 14 Epilepsy 3483 3147 111%14 15 Anxiety 3252 3460 94%17 16 Gastroesophageal Reflux Disease 3105 2844 109%15 17 Asthma 2906 3213 90%20 18 Depression 2781 2287 122%18 19 Breast Cancer 2386 2496 96%19 20 Cardiovascular Disease 1773 2311 77%

Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016

This growth is very mixed across disease areas, with Depression & ADHD seeing the largest increases and Multiple Myeloma & CV disease seeing the largest decreases.

The following slide shows the ’Top 20’ pages ranked by page views along with the corresponding number of annual edits

Most Edited Pages

Most Edited Pages• Page edits in the previous year are

significantly less than the all time average indicating pages are maturing• Edits to the COPD page in the last

year are comparable to the all time annual edits • Influenza has dropped sharply with

respect to edits, 33 in the last 12 months versus an annual average of 350• ADHD has the most edits in the

last 12 months, reflecting its ’controversial’ status Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016

Rank Disease Page Edits Previous Year Page Edits All Time per year1 Bipolar 294 5082 Schizophrenia 204 5013 Crohns disease 225 2884 Multiple Sclerosis 80 3445 Diabetes 84 4746 Alzheimers Disease 186 5087 HIV 56 3028 ADHD 456 7609 Hypertension 184 335

10 Influenza 33 35011 COPD 195 19812 Rheumatoid Arthritis 94 19013 Multiple Myeloma 109 9214 Epilepsy 217 32015 Anxiety 167 23816 Gastroesophageal Reflux Disease 96 14217 Asthma 83 46718 Depression 274 34419 Breast Cancer 167 43320 Cardiovascular Disease 70 222

The following slide focuses on edits for the Top 10 conditions and looks at the Top 5 editors volume of contributions for each of

these conditions.

The Top Editors

Rank Disease Total Editors

Total Edits

Editor #1 Editor #2 Editor #3 Editor #4 Editor #5

1Bipolar

62 294 70 47 27 20 14

2Schizophrenia

61 204 60 15 14 8 7

3Crohns Disease

100 225 44 22 8 8 8

4Multiple Sclerosis

32 80 29 7 6 3 2

5Diabetes

42 84 23 3 3 3 3

6Alzheimers

74 189 40 31 8 5 4

7HIV

33 56 6 4 4 4 3

8ADHD

113 457 101 56 38 27 23

9Hypertension

70 185 46 10 10 7 6

10Influenza

24 33 4 3 2 2 2

Editor No of diseases edited

Doc James 8

Rjwilmsi* 6

Permstrump 3

Cynulliad 2

Jytdog 2

Motivação 2

Across the Top 10 diseases, 6 of the Top 5 editors have edited more than one disease with

Doc James dominating

Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016

Doc James is #1 editor across 6 and #2 editor across 2 of the top 10 diseases

*Note Rjwilmsi mostly corrects reference formating using a semi automated software application

Rank Disease Total Editors

Total Edits

Editor #1 Editor #2 Editor #3 Editor #4 Editor #5

1Bipolar

62 294 70 47 27 20 14

2Schizophrenia

61 204 60 15 14 8 7

3Crohns Disease

100 225 44 22 8 8 8

4Multiple Sclerosis

32 80 29 7 6 3 2

5Diabetes

42 84 23 3 3 3 3

6Alzheimers

74 189 40 31 8 5 4

7HIV

33 56 6 4 4 4 3

8ADHD

113 457 101 56 38 27 23

9Hypertension

70 185 46 10 10 7 6

10Influenza

24 33 4 3 2 2 2

Across this group of editors Doc James has more edits than the other 5 put together

Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016

Doc James is has 372 edits versus 254 combined of the other highlighted top editors

Editor Total Number of

Edits

Doc James 372

Cynulliad 84

Permstrump 57

Rjwilmsi 40

Jytdog 38

Motivação 35

Rank Disease Total Editors

Total Edits

Editor #1 Editor #2 Editor #3 Editor #4 Editor #5

1Bipolar

62 294 70 47 27 20 14

2Schizophrenia

61 204 60 15 14 8 7

3Crohns Disease

100 225 44 22 8 8 8

4Multiple Sclerosis

32 80 29 7 6 3 2

5Diabetes

42 84 23 3 3 3 3

6Alzheimers

74 189 40 31 8 5 4

7HIV

33 56 6 4 4 4 3

8ADHD

113 457 101 56 38 27 23

9Hypertension

70 185 46 10 10 7 6

10Influenza

24 33 4 3 2 2 2

Across the Top 10 of this cohort of top editors Doc James has almost half of the edits (47%)

Data sourced from Wikipedia taken over the previous 12 months – Oct 29 2015 – Oct 28 2016

Doc James has 372 edits versus 415 combined of the other highlighted top 10 editors (47% of total)

Editor Total Number of

Edits

Doc James 372

Cynulliad 84

Permstrump 57

Seppi333 56

Barbara 44

Rjwilmsi 40

Jytdog 38

BallenaBlanca 38

Motivação 35

Garzfoth 23

The Top Editors - summary

So Doc James aka Dr James M Heilman has absolutely dominated the editing landscape of these most viewed medical conditions in

the last 12 months. This is an absolutely impressive individual achievement, particularly as Dr Heilman edits across the field of

medicine

It did however raise some questions, so I figured who better to address than Dr Heilman himself, and he kindly agreed to answer

them!

(See this link for Doc James’ broader edits across medicine where he dominates across all languages)

Part 2Interview with Dr James Heilman (Doc James)

James Heilman is one of the primary editors of Wikipedia’s health and medical content, like all of the online encyclopedia’s collaborators he contributes on a voluntary basis. He was appointed head of the department of emergency medicine at East Kootenay Regional Hospital in Cranbrook, Canada, in October of last year, after having worked there as an emergency physician since 2010. He also teaches at the University of British Columbia. In 2000 he graduated in Anatomy from the University of Saskatchewan, where he earned his medical degree in 2003. Since then, he has spent most of his career working in emergency medicine, teaching and writing.

Dr James Heilman (Doc James)

Gary: Are there issues with one person having so much influence on a particular subject area? For example giving too much of a one sided perspective, creating a fragile situation if that person leaves or simply being stretched too thin

Doc James: As Wikipedia's goal is simply to reflect the best available evidence and we have clear guidelines that define what these are, I think the risk is lower. There are definitely concerns regarding the size of the editing community and risks of deterioration if a few key individuals were to quit or move on. The same concerns exist in other topic areas and are not exclusive to medicine.

Gary: What can Wikipedia / Wiki project medicine do to encourage more editors of a diverse nature to get involved in contributing to medical content?

Doc James: We are working with medical schools including USCF. We are collaborating with the CDC, PAHO, and the NIH as well as a number of medical journals. A number of us travel around and speak at medical conferences to encourage more health care providers to get involved, but it is tough as people are busy. Growing the community is a sort of holy grail.

Gary: Doctors clearly rely on Wikipedia but very few seem to edit. Are doctors just takers in this regard and do more need to get involved in editing?

Doc James: All students who work with me get training on editing Wikipedia. While the core community is small there is a much larger group that edits to a lesser extent.

Gary: You mentioned your work in helping doctors get involved, i.e. as part of their medical school training. What other creative ways can be employed to get doctors contributing more?

Doc James: We have tried a large number of things to encourage people to contribute. While we have been successful in bringing about short term contributions, creating long term editors has been more elusive. Hopefully over time working to improve Wikipedia will garner greater academic recognition. When improving Wikipedia helps students land a residency position or professors gain tenure I believe people will make more time to do this work

Gary: If a medical device /biotech/pharma company had a real issue with something on a Wikipedia medical page, perhaps from a patient safety perspective what would you advise them to do?

Doc James: If there is an actual significant error, they can raise this concern at WT:MED along with a high quality secondary source. They need to keep brevity in mind. If they want an article about their device rewritten or a bunch of minor changes made they will probably not find someone who will do this. We strongly suggest they not edit the content directly or pay someone to edit on their behalf.

Gary: How do you keep up with this gargantuan task and work in your leading physician role?

Doc James: I work half time as an ER physician and full time as a Wikipedian :-)

Many thanks to Dr James Heilman for answering these questions so candidly. I am interested if you have any thoughts or questions, if so please get in touch! In the case of questions I am happy to pull together and share with Dr Heilman for a follow up discussion.

Thank you

@garymonk

linkedin.com/in/garywmonk