G-I-N North America Webinars

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1 1 G-I-N North America Webinars Involving Consumers in Guideline Development: A Case Study, September 2014 Enhancing Shared Decision Making at the Point of Care: The SHARE IT Project & MAGICapp, October 2014 Development and Dissemination of Patient Versions of Clinical Practice Guidelines, Today

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3 1. What do people think about guidelines? What do they want? 3 2. What are we providing? Answer your questions 3. What can we do? 4. What are we planning to do? Answer your questions

4 Why provide clinical practice guidelines to patients and the public? Great source of health information AND RECOMMENDATIONS 4

5 5 Guidelines versus other health information The effect of Vitamin C on the common cold Researchers in the Cochrane Collaboration conducted a review of the effect of vitamin C on the common cold. After searching for all relevant studies, they found 30 studies in up to people. Their findings are summarised below. What is the common cold and why take Vitamin C? Symptoms of the common cold are well known and can include runny nose, sore throat, fever and headache. Most adults, who are at normal risk, will have two to three colds a year that last about 3 to 4 days. People who are at high risk, for example, adults doing intense physical activity or working outside in sub arctic conditions, have more than 3 colds a year that last about 6 days. The common cold is caused by a virus and cannot be cured by antibiotics. Since it cannot be cured, much research has been done to find ways to prevent colds or reduce symptoms. The effect of taking more vitamin C than in a normal diet has been researched for over 60 years. Most countries recommend about 40 to 90 mg of vitamin C a day. The 30 studies in this review tested vitamin C supplements (usually pills) at 1000 to 2000 mg (1 to 2 grams) a day. What the research says Taking 1 to 2 grams of vitamin C per day for about 12 weeks regularly to prevent a cold In people at normal risk, vitamin C will make little or no difference on the chance of catching a cold will decrease how long a cold lasts by a few hours will have little or no side effects Taking 1 to 2 grams of vitamin C per day as soon as a cold starts probably will make little or no difference in how long the cold lasts People at high risk may have benefits when they take Vitamin C to prevent a cold. The effect on children and the effect of megadoses of Vitamin C (4 to 8 grams per day), are not known. What should I do? Should I take Vitamin C? What do they recommend? What happens How long cold lasts if Vitamin C is taken as soon as cold starts Chance of catching a cold Side effects Not taking Vitamin C The cold lasts 84 hours or 3 ½ days Taking Vitamin C (1 to 2 g per day) The cold lasts 2 fewer hours (9 fewer to 4 more hours) * People at normal risk 50 per 100 people 49 per 100 people (48 to 50 per 100) People at high risk 70 per 100 people 35 per 100 people (27 to 46 per 100) What happens Probably will make little or no difference in how long the cold lasts Little of no difference in the chance of catching a cold May decrease the chance of catching a cold 6 per 100 people 6 per 100 people Little or no difference in id ff Quality of evidence Moderate High Low Hi h

6 Unique information from clinical practice guidelines 6

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8 Why provide clinical practice guidelines to patients and the public? Great source of health information AND RECOMMENDATIONS 8 Some evidence that patients may be able to influence the behaviour of physicians (patient mediated interventions) Some evidence that health information for patients improves outcomes Belief that they want information from guidelines but do they?

9 What are current attitudes towards clinical practice guidelines? 9 Systematic review (meta synthesis, meta ethnography) of 26 studies Thematic analysis

10 What do people think could be the purpose of providing a patient version? 10 Assist with decision making Provide education Provide advice Help with self care Prepare for doctor s visit Reassure

11 What do people think could be the purpose of providing a patient version? 11 Assist with decision making Provide education Provide advice Help with self care Prepare for doctor s visit Reassure she wished that [it] was available because she believed it would have helped her and her husband feel like they could do more to promote recovery It really is a great comfort. Then you don t worry as much. So that was a big help.... It removes the fear a little bit because you re not ignorant.

12 What do people think is the purpose of providing a patient version? 12 Negative attitudes and doubts Restrict access to care Control costs Using medical guidelines sounds like your doctor can t give you other treatment without approval

13 What are current attitudes towards clinical practice guidelines? Is this advice for me? 13 I am an individual My disease is different This does not apply to me Does it work? (what s the evidence) I want this information backed up with Here s the research behind it

14 14 What are we providing? What are you, or your organisation, doing? a) already producing patient versions b) considering patient versions but not doing them yet c) not considering yet d) other

15 15 What are we providing? Perform a content analysis of patient versions of guidelines available Include any patient version? NO

16 16 Who was producing patient versions of guidelines? Searched guideline portals (English) to find organisations producing at least 6 guidelines in last 3 years Produced at least 4 patient versions in last 3 years 34 patient versions from the 17 organisations

17 Current patient versions: Content analysis of 17 organisations Unclear recommendations 17

18 How did we identify a recommendation? 18

19 How were recommendations written? 19

20 Current patient versions: Content analysis of 17 organisations 20 Unclear recommendations Vague description of benefits/harms

21 What was the evidence? 21

22 Personalisation and applicability 22 How was this conveyed? Personal stories

23 Personalisation and applicability 23 1/34 used a personal story

24 Personalisation 24

25 Questions? 25

26 What can we do? 26

27 What are we planning to do? 27

28 How to communicate recommendations? 28

29 Colour or black and white Different number Symbols of symbols on their own likely not enough big or small Symbols (for smart consistent phones) across different languages Traffic light variation

30 User testing with patients and public Colour by itself is not helpful

31 We are very confident that the benefit of having radiotherapy for your cancer is worth the associated risks. What happens when strong against? It is likely that the Is Green benefit light of having ok? radiotherapy for your cancer is worth the associated risks.

32 Shouldn t we say that everyone should talk to their doctor?

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34 How to communicate evidence? The effect of Vitamin C on the common cold Researchers in the Cochrane Collaboration conducted a review of the effect of vitamin C on the common cold. After searching for all relevant studies, they found 30 studies in up to people. Their findings are summarised below. What is the common cold and why take Vitamin C? Symptoms of the common cold are well known and can include runny nose, sore throat, fever and headache. Most adults, who are at normal risk, will have two to three colds a year that last about 3 to 4 days. People who are at high risk, for example, adults doing intense physical activity or working outside in sub arctic conditions, have more than 3 colds a year that last about 6 days. The common cold is caused by a virus and cannot be cured by antibiotics. Since it cannot be cured, much research has been done to find ways to prevent colds or reduce symptoms. The effect of taking more vitamin C than in a normal diet has been researched for over 60 years. Most countries recommend about 40 to 90 mg of vitamin C a day. The 30 studies in this review tested vitamin C supplements (usually pills) at 1000 to 2000 mg (1 to 2 grams) a day. What the research says Compared to only a narrative summary Understanding and accessibility was improved < 65% people answered questions correctly Santesso N, Rader T, Nilsen ES, Glenton C, Rosenbaum S, Ciapponi A, Moja L, Pardo JP, Zhou Q, Schünemann HJ. A summary to communicate evidence from systematic reviews to the public improved understanding and accessibility of information: a randomized controlled trial. J Clin Epidemiol Feb;68(2): Taking 1 to 2 grams of vitamin C per day for about 12 weeks regularly to prevent a cold In people at normal risk, vitamin C will make little or no difference on the chance of catching a cold will decrease how long a cold lasts by a few hours will have little or no side effects Taking 1 to 2 grams of vitamin C per day as soon as a cold starts probably will make little or no difference in how long the cold lasts People at high risk may have benefits when they take Vitamin C to prevent a cold. The effect on children and the effect of megadoses of Vitamin C (4 to 8 grams per day), are not known. What happens How long cold lasts if Vitamin C is taken as soon as cold starts Chance of catching a cold Side effects Not taking Vitamin C The cold lasts 84 hours or 3 ½ days Taking Vitamin C (1 to 2 g per day) The cold lasts 2 fewer hours (9 fewer to 4 more hours) * People at normal risk 50 per 100 people 49 per 100 people (48 to 50 per 100) People at high risk 70 per 100 people 35 per 100 people (27 to 46 per 100) What happens Probably will make little or no difference in how long the cold lasts Little of no difference in the chance of catching a cold May decrease the chance of catching a cold 6 per 100 people 6 per 100 people Little or no difference in side effects Quality of evidence Moderate High Low High Quality of evidence: The quality of the evidence is either ranked as high, moderate, low or very low. The higher the quality, the more certain we are about what will happen. *The numbers in brackets show the range where the actual effect may be.

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39 39 Contact us Create a patient version of your guidelines Participate in this research Share experiences Nancy Santesso santesna@mcmaster.ca Shaun Treweek streweek@mac.com

40 Questions? 40