OK to ask campaign: Summary report Purpose of document Summary report of the OK to ask campaign Intended circulation DH SMT NIHR Communications Working Group NIHR communications colleagues Trust coordinators for the campaign Date of issue Monday 15 July 2013 Background: Clinical research is the way in which we improve treatments in the NHS. In many cases doctors will tell patients about research but we also need patients to ask about it and keep research at the top of the NHS agenda. A recent consumer poll also showed only 21% of patients and the public said that they would feel confident asking their doctor about research opportunities. In response to this, on International Clinical Trials Day 2013 and during the whole of 2013/14 The National Institute for Health Research (NIHR) is promoting the fact that it s OK to ask about clinical research. The campaign is aimed at patients and the public, health professionals, researchers and wider NIHR supporters, all of whom had an opportunity to get involved with and/or support the campaign. Summary The OK to ask campaign demonstrated that we can get the research community behind a common theme. The campaign has also helped to deliver momentum for research awareness 1 and has enabled us to establish a list of Trust coordinators and patient ambassadors to help us to promote future messages about clinical research. 1 80% of people surveyed said the campaign had helped to deliver some momentum for research awareness in their Trust, Network organisation
Summary report Sharing across Trusts in England Over 55 people volunteered as Trust coordinators to promote the campaign within their Trusts We sent out 40,000 leaflets, 5,000 clinician cards and nearly 250 foam hands free of charge to assist people promoting the campaign across England A further 30 pull-up banners, 842 posters, 1,130 clinician cards and 2,950 leaflets were ordered by Trusts across England directly from www.resourceorders.nihrcrn.org.uk We received details of over 150 events happening to promote the campaign on International Clinical Trials Day or during that week We have added 20 patient ambassadors to our database through the OK to ask campaign Sharing across the NIHR We launched www.nihroktoask.com to explain the campaign and act as a central point for resources which included the OK to ask logo, campaign badge, leaflet, posters, pull-up banner, clinician cards and copy for newsletters and websites A news story and link were shared on the main NIHR website Other parts of the NIHR supported the campaign by engaging with relevant communities via e-bulletins and online platforms The campaign was supported across the Clinical Research Network, including by DeNDRoN and the SRN who ran news stories about the campaign on their websites and by the MCRN who produced their own materials for the campaign and promoted them within their LRNs Reaching the public The online resource key statistics Website unique visitors to the Clinical Research Network s website went up 25% compared to previous month s comparable period Since the launch of the online resource on 1 May, the OK to ask site has been visited by nearly 10,000 unique users These visitors spent an average of 4 minutes 25 seconds browsing the pages The resources page of the website has so far received nearly 2,500 unique visits Radio Simon Denegri and patient ambassador Elaine Trott took part in an organised radio day on the Friday before International Clinical Trials Day. The story was featured on 17 radio stations as part of a live or pre-recorded interview (including major stations Gem 106 and Real Radio Yorkshire) and 49 stations as part of a Talking Health feature. This includes 49 BBC stations. This is a total reach of approx 3.7 million.
TV The story was also broadcast on BBC South Today and BBC Look North a total broadcast reach of approximately 1.2million Publications The campaign was supported with a national press release and 20 regional press releases. The regional press releases were accompanied by a photograph of a local patient and/or carer and doctor or research nurse. The photo opportunities were organised by the Trust coordinators and the central CRN communications team. We have received 20 pieces of press coverage so far with an Advertising Value Equivalent of over 20,000 2 Social Media Over 380 photographs of support have come in so far via the Instagram site www.instagram.com/nihroktoask. These include photographs of Ben Goldacre and the Alzheimer s Research UK team The facebook page www.facebook.com/nihroktoask has received 252 likes so far On twitter, around 500 tweets have referenced the hashtag #nihroktoask Tweets of support included many individuals, NHS Trusts and charities such as Manchester Hospitals, NHS Eastern Cheshire, South Central Ambulance Service, Salford R&D, The Intensive Care Foundation, The Wellcome Trust, North West People in Research Forum, Bliss Baby Charity, Parkinson s UK, Kidney Research UK, The Stroke Association, Diabetes UK, Marie Curie UK and Beat Blood Cancer Ben Goldacre tweeted about the campaign 4 times to over 280,000 followers and appeared in a short video promoting the campaign which was retweeted 14 times Information about the campaign was shared with relevant Linked In groups via the NIHR Clinical Research Network company page, including Clinical Research Professionals which has a membership of 59,634, NHS Networking area which has a membership of 9,456 and NHS Putting Patients First which has a membership of 223. Other groups which also received the story are Alzheimers & Dementia Professionals, dlife It s YOUR diabetes life, In search of Patient Engagement and UK Research Nurses Informing healthcare professionals The story was featured in the 16 May 2013 edition of NHS news A link to the online resource was featured in the Guardian s Clinical Research Zone Many Trusts also featured information about the campaign on their own websites Members from the CRN communications team have presented to Trusts about the campaign including Countess of Chester Hospital NHS Foundation Trust, Lancashire Teaching Hospitals NHS Trust and Oxford University Hospitals Trust 2 See Appendix
Engaging Charities Cancer Research UK featured information on the campaign in two posts via their online platform Cancer Chat. The posts have had over 900 views so far Alzheimer s Society featured the story as their top news item in the May edition of their newsletter Research Update and Alzheimer s Research UK sent in a photograph of support with the OK to ask campaign badge The Stroke Association featured the story in the news section of their website The UK Dermatology Clinical Trials Network supported the campaign and tweeted about it to the 4000 followers of the Nottingham Support Group of Carers with Eczema Following the success of the campaign, UK Vision 20-20, an RNIB initiative, has requested that we tell them how they can get involved with the campaign and promote it to their audiences in the longer term Informing the broader research community TCC sent out information about the campaign to their trainees Ashridge Business School supported the campaign by sending out an email to approximately 250 recipients, detailing what researchers could do to get involved Health Research Authority referenced the OK to ask campaign in a press release they issued about patient and public research. Chief Executive Janet Wisely also provided a message of support: We welcome and support the It s OK to ask campaign to encourage more patient participation in research. We helped to publicise International Clinical Trials Day, on 20 May, by announcing the results of research we have conducted with patients and the public to understand their views on health research. Increasing the understanding and awareness of research amongst both patients and clinicians, and increasing appropriate participation, will together help make the UK a global leader in health research. (Janet Wisely, Chief Executive, HRA) Engaging industry NOCRI sent out a bulletin on the campaign to their infrastructure contacts An email was sent out to Roadmap and Commercial Clinical Operations Group (ccog) promoting the campaign Evaluation We created a survey to collect feedback from patients, healthcare professionals and NIHR staff about the campaign. 229 people completed the full survey 77% of people rated the overall campaign as good or excellent 67% of people said that campaign engagement within their Trust was either good or excellent
71% rated how well the campaign was received by patients as either good or excellent 80% said that the OK to ask campaign helped them to deliver some momentum for research awareness within their Trust, Network or organisation 98% said they would continue to promote the OK to ask message Although it is difficult to ascertain the number of people that approached clinicians to ask about clinical research, we have heard anecdotally that the campaign worked very well. We also received some calls through to the OK to ask helpline and some messages via the website, although these numbers are unlikely to represent the breadth of impact. However, we do now have a benchmark for the future. Lessons learned We had a good level of buy-in on one national theme. People seemed to enjoy being part of a national campaign and that they could include promoting the OK to ask message through activities they already had planned for International Clinical Trials Day however we need to allow more lead in time for Trusts and Networks to fully engage Identifying Trust coordinators and patient ambassadors was a great way to spread the message on the ground Providing free materials was very popular and allowed us to build up a list of useful contacts although we underestimated demand. If the campaign was to continue we would have to consider how we would cover this cost Social media worked very well, especially Instagram and was a great way to track engagement across England. It was also a simple and effective way to show we were mobilizing support, kept the campaign live and gave it a human face Creating a campaign prop in the form of a foam hand gave us some great regional photographs to support our campaign, and went down well with Dame Sally Davies Organising the photo opportunities within Trusts and identifying regional patient ambassadors allowed us to localize the press releases and radio coverage. We received some positive regional coverage that we wouldn t otherwise have got Providing newsletter/website copy that people could just use worked well particularly with NHS Trusts The CRN s consumer poll survey and recruitment statistics allowed us to promote good stats and a background story for the media. This was especially beneficial for the BBC when they showed an interest We could boost PPI involvement across the NIHR in active delivery of the campaign, particularly with charity partners Patient groups remained an untapped resource during the campaign. If we would have had more time we would have been able to pursue this route further Whilst the patient side of the campaign was very strong, we have identified the need to also focus on the clinician side rather than only providing the resources we did Early approval from DH is very important in ensuring we can start in a timely fashion and give everyone involved enough time to fully engage in a campaign
Recommendations Use International Clinical Trials Day to drive engagement Start earlier in the year to allow everyone more time Create a campaign which is equally weighted to both the patient and clinician audience
Appendix: Press coverage