Monday, 23 November 2015

Challenges - of one sort or another

Wednesday at the NCRI Conference was another full and varied day.

Back at the Dragons' Den on the Monday, a challenge was set.  AstraZeneca had 3 teams (1 in-house and 2 external) working on a 50hr challenge to design an app that would be useful for cancer patients.  The teams took away information given to them in conversation with patients before setting to work on their apps - with one team engaging with 3 groups in different global time zones to maximise their 50 hours!  The teams came back on Wednesday morning to present their offerings and give us an opportunity to try them out before we voted at lunchtime for our favourite.

It was a fun project but with serious intent and support from the Christie hospital in Manchester.  Each team had picked up on different emphases but all had taken forward the needs we'd expressed around being in control, keeping and using information, and liaison between providers.

I dipped in and out of the presentation because I was keen to attend part of one of the parallel sessions.  However, I did manage to see each app demonstrated and have an in-depth look at one and a half!  Each app had its strong points and we were asked to give feedback on them all.  I had a clear favourite based on approach, content and a very clean interface.  This must have chimed with other people, as it emerged as the winner.  Many congrats to pebble{code}.  Their app even included tracking of a smart sample jar/tube, which could be tracked in the same way as a parcel.  This sounds great to me although I'm not entirely sure how the health professionals would like it ...

My personal preferences were for an app that would help keep track of appointments and information and which would provide somewhere to record and keep notes.  I was much less interested in using it as a journal or means of connecting with others.  In part, this may be because there are already well established routes for women treated for breast cancer to connect; I might feel differently if I was being treated for one of the rare cancers.

In between I dashed out to the session on early diagnosis, particularly to hear from Usha Menon, who was updating on the UK ovarian cancer screening trials, and from Janet Dunn on the Mammo50 feasibility study.

UKCTOCS, a population screening trial, sent invitations to over 1.2 million women and is one of the largest RCTs, randomising to control, CA125 + ultrasound, and ultrasound alone.  With 13 centres and large numbers it was necessary to ensure a highly streamlined process and this was indeed one of the features of this trial.  Follow up was aided by having the NHS numbers of the participants.  Sensitivity and specificity was encouraging but the key issue will be impact on ovarian cancer mortality.  Results from this trial will be available next month and the event will be live-streamed.  Details will be on the trial web site; a search for UKCTOCS will get you there.

The other screening study was UKFOCSS, which offered the multi-modal screening option at 4 monthly intervals (for the CA125 testing, with annual ultrasound unless CA125 results indicated earlier) to high risk women. The intensity resulted in quite a few recalls with a certain amount of distress for those recalled, but overall this didn't appear to affect anxiety or reassurance.  Once again, high sensitivity and specificity was a feature but the results for this trial are not yet available.

Usha Menon finished her presentation with thanks to those involved and made a point of first thanking the women who had taken part in these trials. She showed a photo of the card made for and sent to the women in UKFOCSS after their last study screening.

The image has been made from 5,737 dots, one dot for each woman in UKFOCSS, and is inspired by the microscopic view of a healthy ovary.  Inside it carries a message of thanks - mine is still on display in my house.

Janet Dunn's paper presented the results of the feasibility study for the Mammo50 trial.  This trial investigates follow up in breast cancer patients aged over 50 at diagnosis.  It looks at annual or 2 yearly mammograms for those who had breast conserving surgery and 3 yearly for those who had a mastectomy from the 3 year post surgery mark.

The feasibility study used focus groups in addition to the QoL and PROMs questionnaires.  The focus groups also looked at perceptions of the trial.  The study concluded that it was an acceptable trial both to patients and clinical teams.  It showed that at the 3 year post surgery mark around 29% of patients were reporting distress, primarily in fatigue, lack of sleep, memory issues and itchy/dry skin.

This is going to be an extremely interesting trial.

The conference finished at lunchtime on Wednesday but I stayed on for a meeting of the Clinical and Translational Radiotherapy Research working group (CTRad).  I'm not actually on this working group but they had several places for interested consumers and I was fortunate enough to get one.

After that it was back to the hotel to pick up luggage and have a drink with a couple of colleagues as we mulled over the conference before heading to the station and the train home.

My final conference post will highlight some of the posters I found particularly interesting, but that is for another day ...

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