Family Web Study Can online communication from health professionals help families at increased risk of bowel cancer to share information? Selina Goodman May 2016 Thank you for coming to hear me talk about my research. I think it is fascinating, but then I would, wouldn’t I! It is entitled the Family Web Study or Can online communication from health professionals help families at increased risk of bowel cancer to share information? This research is partly funded by a local charity Bowel Cancer West.

Making a difference Stephen Sutton said “ I don’t see the point in measuring life in terms of time anymore. I’d rather measure life in terms of making a difference’. I would like to start by quoting Stephen Sutton, who was an inspirational young man who raised over £5.5 million for the Teenage Cancer Trust but died of bowel cancer aged 19. He said “ I don’t see the point in measuring life in terms of time anymore. I’d rather measure life in terms of making a difference’. I think I agree with him. Tragically Stephen’s cancer was probably preventable if he had been investigated earlier. He had Lynch Syndrome. Stephen Sutton MBE died aged 19 from colon cancer in May 2014

Risk reduction Regular bowel screening by colonoscopy Polypectomy Regular Aspirin reduces cancer incidence. Lifestyle changes: exercise, diet, smoking, obesity. Symptom awareness. The cancer incidence is reduced because colonoscopy allows pre-cancerous polyps to be removed from the colon and rectum by polypectomy. The clinician literally snips it off! In addition to that, if you know about your increased risk you can take action to reduce it. Taking regular aspirin has been shown to reduce bowel cancer incidence by between 20% in a population based study to over 60% in a group with Lynch syndrome. On top of that, you can be alert to symptoms like change in bowel habit or rectal bleeding and know to maintain a healthy weight, exercise regularly, eat a diet low in animal fat and cut out smoking, all of which will reduce your risk. But if you don’t know you are at risk you might not think to do any of these things.

Family web Study Objectives Short term: Find out how information & support could be improved? What other information needed? Is it practical to provide information electronically (e.g. via a website)? Create a website to test this method of sharing information with potential users.

Family web Study Objectives Long term: Investigate if this method means more people at high risk get screening or have testing? Seek adoption in NHS?

Family web Study Eligibility criteria Anyone from a family with a known genetic condition giving an increased risk of bowel cancer (e.g. Lynch syndrome) Anyone advised to have regular bowel screening because of their family history. Anyone whose cancer was due to a genetic vulnerability.

Family web Study Phase 1: Anonymous survey (300+) Learn from experiences & opinions of what is helpful. what is acceptable and what people want. Phase 2: Telephone interviews (~20) Phase 3: Develop website via interactive ‘Think-Aloud’ interviews (~30).

Family web - website for families Online space for sharing information With relatives With health professionals Advice about what information may be needed How to approach relatives

Family web - website for families Information resource on: Bowel cancer Surveillance recommendations colonoscopy Inherited cancer syndromes

NHS Trusts recruiting Plymouth North West Thames Exeter Birmingham Cardiff

NHS Trusts recruiting and proposed recruitment sites Plymouth North West Thames Exeter Cardiff Birmingham Guy’s Hospital Southampton Oxford Manchester Torbay Newcastle Bristol

Preliminary results of Phase 1 survey Online survey via Survey Monkey web link https://www.surveymonkey.co.uk/r/familywebstudy Lynch Syndrome UK , Bowel Cancer West and Beating Bowel Cancer websites. 82 people had completed the online survey 60 willing to be interviewed on the telephone.

Respondents to survey so far Predominantly women ( 67 / 82) Personal history of cancer ( 51 / 82) From across the UK Aged from 20 to 74 Varied level of education. So far, 82% of respondents are women and over 60% of respondents (both men and women) have had cancer. I am delighted that due to the survey being online we have received responses from across the UK and people taking part are across a wide age range and have a varied range of qualifications or education.

What information received

Where more information came from

Other ways of providing information securely Using technology to support families and access services Ways in which your health professional could help more, some themes.. Screening: Not having to “fight for it all the time.” At the right frequency. Automatic referrals for screening Health professionals: GPs and other health professionals need to be better informed - " I know more than them". Need to be more proactive in contacting relatives. Support; for themselves, for their families, a co-ordinator for care new information when available. A Register of LS patients.

Family Web Study Questions?