INTERNATIONAL CLINICAL TRIALS DAY 20 MAY 2013 IT S OK TO ASK CAMPAIGN BRIEFING NOTE FOR PPI LEADS Background International Clinical Trials Day is on or around 20 May each year, and commemorates the anniversary of the very first clinical trial by James Lind. The date offers an opportunity for those working in the research field to take action to raise the profile of clinical research in the NHS in England (and beyond). In the past, constituent parts of the National Institute for Health Research, working individually, have undertaken various promotional activities in connection with International Clinical Trials Day, or used the date as a "hook" to publicize their work. We recognise that our voice will be stronger if we adopt a common campaign theme, so in 2013 the NIHR will be inviting the different parts of the organisation (and key stakeholders) to adopt a single theme, and build this into any activity around International Clinical Trials Day. The theme is: "It's OK to ask." Why "it's OK to ask"? Clinical research is thriving in the NHS. Nevertheless, research has low visibility in the NHS (little information about research is openly available to patients) and most patients are unaware of local opportunities unless they are approached to take part in a particular study by their doctor or nurse. Despite the success of this clinician-led approach, we want patients to have both the information and the confidence to raise the subject of clinical research themselves if they wish to do so - without always having to rely on the first approach coming from a clinician. According to a consumer poll by the NIHR Clinical Research Network: Only 6% of those questioned said the public are well-informed about clinical research in the NHS Less than 21% said they would feel very confident about asking their doctor about research opportunities We want this campaign to empower patients, and encourage clinicians and researchers to support a more patient-active approach.
Campaign aims Patient activism: raise awareness amongst patients and patient groups about the role of research in the NHS, the role of patients in research, and that it s OK to ask your doctor about clinical research and if it s something they should consider. We want to get 1,000 patients across the country to ask, and log the fact they did so (and the response) on our campaign Facebook page. Note: we will make it clear in the campaign materials that we want this to be a meaningful question not an extension of the mystery shopper campaign that the NIHR Clinical Research Network carried out recently. Clinical research is the way that we gather evidence to improve treatments and care for patients in the NHS By taking part in clinical studies, patients are helping others like themselves and helping the NHS to improve According to the NHS Constitution, patients have a right to participate in a clinical research study if they are suitable for it Patients and the public really care about research: only a very small percentage (less than 2.5%) think that research is NOT very important Less than 21% of patients feel very confident about asking their doctor about research but we want to get the message across that it s OK to ask Through this campaign, we re encouraging patients and their carers across the country to ask their family doctor or consultant about clinical research, and whether it might be right for them or their loved one We re then asking patients/carers to put a message on our Facebook page (using an agreed hashtag) to tell us that they asked their doctor, and helped us to remind healthcare professionals that research matters to patients We re aiming to get 1,000 patients to log their involvement in this campaign between 20 May and the end of June 2013 Clinician engagement: We want to encourage clinicians and those working in the clinical environment to think positively about patient approaches on research, and to consider how they respond to patients who take a pro-active interest in clinical research, and how they/their NHS organisation can channel that interest positively Clinicians are doing a great job of making research happen in the NHS: the proof is that annual patient recruitment figures into studies have doubled in the past five years (NIHR Clinical Research Network) Research is vital if we are to meet the challenges faced by the NHS and keep improving treatments for patients Patients are our partners in delivering research, so we need to empower them to asking about clinical studies and how they can get involved On clinical trials day, we re calling on every clinician to consider what they would do if a patient were to ask them about clinical research, and every NHS institution to take a critical look about what they are doing to empower patients and let them know that it s OK to ask We re also asking NHS Trusts to Tweet what they are doing for International Clinical Trials Day and/or send us a picture of their event on the Facebook site using an agreed hashtag
Researcher solidarity: We want individual researchers and research groups to show that they back our drive to empower patients in clinical research by asking them to take a picture of themselves with the It s OK to ask campaign badge, and post it on our Instagram site using the campaign hashtag (this will then automatically appear on the campaign Facebook wall) At the moment, patients are largely unaware of clinical research as a core activity in the NHS, unless they are actively approached by a clinician to get involved in a study We could recruit to studies better and faster if we empowered patients to ask about clinical research opportunities, as well as relying on the clinician-led approach We are campaigning to tell patients that it s OK to ask and we want researchers to back us in this work by downloading the campaign badge, and sending us a picture of themselves with it using the special Instagram hashtag, to show they support patients in driving up the demand for research NIHR showcase: We want to use the date of 20 May to encourage NIHR-funded organisations to develop happenings (for example patient open-days, awareness stalls etc) that raise awareness of clinical research, promote the campaign theme and publicize their own local patient-centred work. We also want to provide an online space where these activities and broader NIHR-funded activities not connected with research development and delivery, can be highlighted. What we re doing centrally Developing the campaign badge, that will be downloadable Organising the national and regional press release and supporting photo, and acting as the press office for the campaign Developing a website page where NIHR organisations can log any events that they are doing specifically for International Clinical Trials Day (eg open-days), and any other non campaign-related activity that you are launching to tie in with the International Clinical Trials Day event Organising the campaign Facebook page where patients can go to log I asked about research Running the Instagram site where the research community can go to put up a picture to say they support patient empowerment in research Producing newsletter copy for use by NIHR and partner organisations Producing a patient-facing campaign leaflet in downloadable form, and making it available on our online ordering resource Managing a dial-in presentation/teleconf to take NIHR communications and PPI leads through the campaign materials and plan Coordinating the campaign and providing the helpdesk for NIHR organisations Tracking results and feeding back to you and the NIHR leadership
How you can help as a leader in the patient engagement field We will be calling on Trust-based Network volunteers from the breadth of the Network to help us to engage an International Clinical Trials Day Coordinator to work with NHS Trusts for this campaign. We would like your support in encouraging Coordinators based in NHS Trusts to come forward. You can find read the version of this briefing that has gone out to general Network staff, which includes the brief for the Coordinator role, on the communications page of The Message. https://portal.nihr.ac.uk/sites/ukcrn/themessage/support/communications/default.aspx However there are some specific things that we would like to call upon you to do as a patient engagement lead at national level: Internal comms: we will post materials on The Message about International Clinical Trials Day, but we need your help to cascade, embed and reinforce them to make sure people know what s happening and how they can take part. Make sure you sign up for alerts on The Message announcements, so you get all the information. Engage with your therapy-specific charities. Get them to: o Carry the badge and a news piece to say they support the campaign on their website o Put a link on their website back to the campaign site o Tell their patient communities about the campaign using their newsletters o Post a picture of someone from their organisation with the campaign badge on Instagram using the campaign hashtag on 20 May Identify and brief a patient ambassador (or several!) in your therapy area who can be the face of the campaign. We will look to use pictures and a quote from these ambassadors on the campaign website. We would like ambassadors to go and talk to their patient groups about the campaign and why it is important, and use their patient contacts to spread the word and get people to join in with it s OK to ask. Consider what you, in your Network, might do to mark International Clinical Trials Day, encourage your Networks to get involved and add their contribution to the special International Clinical Trials Day web-page, so we get a picture of everything that s happening to mark this special day. Use your Network s newsletters or cascade mechanisms to ask researchers and clinicians to get involved with the campaign. Copy for this will be supplied for you to adapt and use. Issue count-down messages and/or tweets (eg: Only x days to go to International Clinical Trials Day) and a link back to the campaign website page Badge it up on campaign day: carry the It s OK to ask badge on your own website and any other relevant materials, a news piece to say you are supporting the campaign on your website on International Clinical Trials Day, and a link back to the website. Badge, copy and link will be supplied for you to adapt and use. Send us a picture of your ambassadors or leaders with the campaign badge on Instagram using the campaign hashtag Support us in making the patient leaflet fit-for-purpose by linking us with a patient from your Network to give views on the content. Daniel Spiers will be in touch about this.
Timescales Your toolkit of materials will be ready by 22 April (badge, copy for newsletters etc) The website page to post your activities up will be available from 1 May, as will the Instagram and Facebook site Questions? Simon Denegri, NIHR National Director for Public Participation and Engagement in Research is spearheading it s OK to ask. For operational questions about the campaign please contact: Louise Wood, tel: 0113 343 9064, email: louise.s.wood@nihr.ac.uk Dan Spiers, tel: 0113 343 0372, email: daniel.spiers@nihr.ac.uk Mark Rawson, tel: 0113 343 0454, email: mark.rawson@nihr.ac.uk