Impact of a patient information website - how, where, what

Impact of a patient information website - how, where, what and why

Peter Rutherford, Paul Forte, Tom Bowen, Rory Matthews and Alex Morrison

University of Wales College of Medicine, Wrexham and Cognitive Applications, Brighton,

UK

Introduction

• Delivery of high quality information to patients with chronic diseases can lead to:– improved compliance/concordance– improved quality of life

• Internet based technology offers an additional resource with some clear advantages:– renewable resource– potential for interaction– accessible at all times

Kidney disease

• Progressive, debilitating, need for dialysis and reduced life expectancy

• Patients are expected to retain much information and make decisions

• Information can be very effective at improving quality of life and concordance

Aims of the project

• To develop an interactive kidney patient information web site

• To perform an internet-based and Renal Unit based survey of the site

Basic principles

• A project team was established (see poster for details of approach)

• Patients led the process to determine the style, colours, language and content of the site.

• Uses animations, patient experiences and includes a bulletin board facility

• Site = www.kidneypatientguide.org.uk

Internet Survey

• An internet-based survey was performed of over 1000 individual visitors by Virtual Surveys.

• Results are presented in comparison to an average of other sites surveyed by Virtual Surveys - UK-based financial and commercial sites.

COUNTRY

25%

61%

14%

Other

USA/Canada

UK

Base : 970 (all answering)

RELATIONSHIP WITH KIDNEY DISEASE

45%

28%

7%

4%

3%

2%

11%

Family/friend/carer

Kidney patient

Medical staff

Other students

Medical/nursing student

Researcher

Other/none


TREATMENTS USED (Patients)

36%

30%

16%

15%

32%

Kidney failure/noton dialysis

Haemodialysis

PeritonealDialysis

Transplant

Other

TREATMENTS USED : UK V USA/CANADA

27%

44%

35%

34%

21%

40%

23%

6%

5%

38%

Kidney failure/not on dialysis

Haemodialysis

Peritoneal Dialysis

Transplant

Other

UK

USA/Canada

LEVEL OF KNOWLEDGE REGARDING KIDNEY

DISEASE

3% 2% 1%14% 23%

4%

27%

36%

26%

30%

30%

31%

26%9%

38%

TOTAL PATIENTS FRIEND/CARER

Not at allknowledgeableNot veryknowledgeableFairly knowledgeable

Quite knowledgeable

Expert


AGE

27%11%

35%

26%

22%

29%

11%

21%

5% 12%

AVERAGE SITE KIDNEY PATIENT GUIDE

55+

45-54

35-44

25-34

Under 24


SEX

65%

35%

35%

65%


Women

Men


HOW HEARD ABOUT WEB SITE: UK vs USA

49%

23%

8%

7%

3%

10%

75%

14%

1%

9%

Search Engine

Link from other site

Word of mouth

Advert in hospital etc.

TV/Press article

Other


MAIN REASONS FOR VISITING WEB SITE

43%

36%

30%

8%

5%

17%

General kidneydisease info.

Info abouttreatments

Advice on specificproblems

Support group info.

Just browsing

Other


OTHER SOURCES OF INFORMATION

54%

37%

33%

24%

17%

4%

6%

18%

Doctors/medical staff

Other web sites

Books

Leaflets

Friends/family

Support groups

Other

None sought


OVERALL OPINION OF WEB SITE

24% 26%

38% 40%

28% 25%

7% 9%


PoorFairGoodVery GoodExcellent

HOW SITE COMPARED WITH OTHER KIDNEY DISEASE

WEB SITES

46%

24%

26%

4%

%

Much better

Little better

About the same

Little worse

Much worse

Internet-based information in nephrology

• Telephone survey amongst UK renal units and patients undertaken by BMRB

• Telephone interview with patients and staff

• Sample– 147 patients– 26 staff

5 9

4 1

15

1 6

2 5 2 42 9

2 2

7 8

Base: All patients (147)

Male Female <25 25-3435-44 45-54 55-64 65+ Working NotworkingAge

Patient sample

Patients perception regarding information

41

50

44

I preferred not to be given alot of information about my

condition


Don’t know

I was given information bydoctors and nursing staff,but didn’t look anywhere

else

I tried to find out all theinformation I could

Information sources for patients

9 3

8 7

8 1

8 0

6 3

5 6

5 4

3 5

3 3

2 2

2 0

1 3

1 2

5

4

5

1

ConsultantDialysis nurse

LeafletsDietician

Other patientBook

GPFriends/relatives

Other hospital nurseSupport groups

PharmacistPractice nurse

InternetHelplineCD-Rom

OtherNone Base: All patients (147)

Information sources for staff

9696

9292

88

85

7373

5046

2727

15

8

1

Leaflets

Books

Other patient/carer

Colleagues

Conferences/seminars

Friends/relatives

Training/university course

Support groupsComputer (not Internet)

Specialist magazines

Internet/website

Helpline

CD-Rom

OtherNone Base: All staff (26)

Patients view of internet based information sites

4 6

2 5

2 2

15

Very good

Good

Fair (1%) / Poor(1%)


Excellent

Don’t know

Problems raised by patients

• Majority had access to the internet at home or via a friend or family member

• Minority had used it to access health information web sites

• Most felt it would be good to do so

• The hospital offers a potential route for internet access

Conclusions

• High quality information web sites can be created to give information to patients with chronic disease

• An internet based survey demonstrated who was looking for information, where from and why.

• A survey of UK renal patients demonstrated practical issues - there is a desire to look for information but limitations in terms of internet access

Finally

• There are problems– Time– Bulletin Board problems

• Contact– [email protected]– [email protected]

Documents

Impact of a patient information website - how, where, what