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PATIENT AND PUBLIC INVOLVEMENT AND ENGAGEMENT STRATEGY
The HPRU will build upon its strong track record in Patient and Public Involvement and Engagement (PPI/E) established in the MRC-PHE Centre for Environment & Health and will honour its core commitment to incorporate PPI/E into all aspects of its work. PPI/E is central to the HPRU and we shall therefore embed PPI/E in our governance structures and Themes. The central role of PPI/E within the HPRU will be manifested by PPI/E as a Cross-Cutting activity, directly managed within the Health Protection Leadership Group. We believe that applied health research and the implementation of findings into public health protection can only be effective if the public are integral to these developments.
- Our PPI/E Strategy
Our PPI/E strategy will operate at three levels:
- We will embed PPI/E in all four Themes so that they have an appropriate level of PPI/E in their applied health research. This will take the form of research user advisory groups, the deployment of public health researchers, the development of user-derived outcome measures, and the use of co-production methods;
- By year 5 we will have evaluated the impact of PPI/E in research in all the Themes. The evidence base for assessing the degree to which PPI/E in research and implementation actually does make a difference to public health is weak, and so the HPRU will add to that evidence in a way that is applicable across England;
- We will establish a strategic oversight group to monitor PPI/E activities throughout the whole HPRU, made up of representatives drawn from all target groups in the HPRU. Its remit will be to ensure that PPI/E participation is effectively put into practice, with a focus on assessing population benefit from the perspective of public health protection. To this end we will draw upon our existing experience and activity of the Community Advisory Board (CAB) established as part of the MRC-PHE Centre for Environment & Health.
Key staff who will be responsible for implementing and evaluating PPI/E will be identified in each Theme and they will be trained to utilise various models of PPI/E in applied health research, its agenda, its conduct and its dissemination. These methods include peer-led evaluation of research findings, the development of public-generated, public-reported outcome measures, cafés scientifiques, experience-based co-design, individual-centred systematic reviews, and co-production in research and training by researchers in a range of different disciplines.
- Communication Methods
Face-to-face discussion and conventional meetings are important to users of environmental and health data. However, increasingly social media are also being used in the PPI/E field for building strategy and for networking about local developments. We will establish a presence on Twitter in order to reach the public who would be unlikely to attend formal events. We will have a strong presence on the HPRU website and look to place podcasts explaining our activity and findings. Many of the people involved in PPI/E are active in their respective specialist national and international networks and we shall adapt these for the transfer of knowledge about the methods used, and results of our HPRU. We intend that these results, both in terms of PPI/E in research and its impact on public health, will be relevant beyond the UK and be applicable to public health systems abroad.
The engagement of the general public is imperative to our work as it provides opportunities for interaction between researchers and the public leading to informed research ideas, improved communication of research topics, and new recruitment methods. We categorise this aspect of our work under the umbrella of Public Engagement with Science (PES).
Our strategy builds on previous successes in this area of activity, including Cafe Research creating discussion opportunities between local people and scientists; a schools based programme, Demonstrating Science; Open Days and education events such as the MRC-PHE Centre for Environment & Heath successful participation in a number of Science Festivals and this year a very successful MRC Centenary celebration event on the concourse of Paddington station. We have created several public information resources such as videos on our LondonAir website and have ensured a high standard of communication via the media, with media training for scientists and researchers. The MRC-PHE Centre for Environment & Health website has a designated public facing area serving to provide information about studies that are recruiting, information and education events and opportunities to get involved. Feedback from those participating in PPI/E and PES activities suggests a need to take research into local people’s ‘own backyard’ by going out into community settings and participating in community activities and events. This call for a shift in the direction of travel will play a significant part in taking forward our PPI/E and PES work.
- Objectives for engaging people in health
- To make research available to people in their ‘own backyard’ by forging links with local communities.
To achieve this we will work with the Community Involvement initiatives which bring together organisations including London Citizens, Primary Care PPI/E groups, and with local community groups via established networks such as Southwark Compact (www.southwark.gov.uk/download/4803/southwark_compact).
Using our EXHALE study as an exemplar to deliver community based research and education activities, we will seek further opportunities to base research in the community to maximise the opportunities for people to be informed and take part. http://tinyurl.com/chcj55o
- Based on the development of new engagement methods we will develop good practice guidance for researchers and scientists on engaging the community in translational research.
- To expand our communication of research activities and findings, ensuring that there are regular media updates about our research available via our University and PHE publications, newsletters and websites that are understandable to a wide audience, and expand our reach to specific community networks. The training we will provide will not only help researchers develop the necessary communication skills, but also support them to take their research into community settings. Building on activities led by King’s ERG, for example Demonstrating Science, we aim to develop community based Cafe Research addressing topics chosen by the public. We will develop use of new media (e.g. our website, social networks and forums) as a means of engaging with the public.
- We will develop the scope of our interactive education activities with a programme based on the National Beacons Programme for Public Engagement (http://www.uea.ac.uk/ssf/cue-east/beacons). This will include learning activities and careers events to take place in the school holidays to inform and encourage local young people’s interest. Building on the success of the MRC Centre for Environment & Health successful participation in a number of Science Festivals, we will expand our work with relevant national and community organisations and charities to develop events and materials that meet the information needs of the public.
- To make research available to people in their ‘own backyard’ by forging links with local communities.
- 2014/15 - Year 1 Accomplishments
Year 1 Accomplishments
Over the first year of the NIHR-HPRU we have sought to build upon our previous PPI/E experience and expand this prior knowledge and expertise across the 4 thematic areas. We have actively sought to embed the principle of PPI/E into the HPRU governance structures and themes, including the recruitment of a lay member (Simon Birkett) onto the External Advisory Group. We have established PPI/E champions across each theme, reflecting membership across the component parts of the HPRU, ensuring that the identified leads have sufficient seniority and experience in PPI/E provision to drive forward our strategy. We are currently formulating our PPI/E strategy document to formalize our objectives over the lifetime of the HPRU for publication on our website. The membership of the PPI/E Strategic Oversight Group (SOG) is as follows:
PPI/E Lead: Mireille Toledano (Imperial)
Theme I: Tony Fletcher (PHE) and Anna Hansell (Imperial)
Theme II: Tim Gant (PHE) and David Phillips (KCL)
Theme III: Mireille Toledano (Imperial) and Antony Young (PHE)
Theme IV: Ian Mudway (KCL) and Rachel Smith (PHE)
We will be holding a set of annual PPI/E meetings for the PPI/E SOG to support their activities across the Themes and to review progress against our PPI/E strategy. We have established a programme of training courses to build PPI/E sustainability and are offering these free to all members of the HPRU. A number of junior HPRU staff have already attended introductory workshops on PPI/E in research ‘Experience Matters’ and those specifically for researchers working in laboratory based research ‘Beyond the Bench’. Moreover, staff have also participated in the Science Media Centres Introduction to the News Media event. Finally, we have been actively engaged in establishing networks with wider PPI Forums e.g. other HPRUs and the Imperial & Partners PPI/E Research Forum, to enable sharing of good practice, resources and innovation. These activities align with our objective of developing good practice guidance for researchers and scientists on engaging the community and media in translational research.
PPI/E examples and highlights
Harwell Science and Innovation Campus facilities open days - July 8th to 11th 2015
Members of the HPRU HIEH team engaged with the public, and particularly schoolchildren, introducing exhibits and answering questions at the annual opening of the Harwell Science and Innovation Campus facilities July 8th - July 11th (http://harwellcampus.com/come-to-harwell/open-days/). During the open week it was estimated that 15-16,000 members of the public visited the site, with approximately 1500 school children visiting on July 8 which was schools day. The HIEH stand highlighted projects in the work areas of ‘Particles and You’, ‘Ensuring a good start in Life’ and ‘Affairs of the Heart’. Three posters were displayed and there were heart related experimental exhibits, nanoparticle cosmetics, and lots of carbon monoxide giveaways including mugs, pencils and colouring books.
One visitor stated, "We were very impressed with the organisation and the activities. It was like an example of how outreach should be at its best."
Breathe London website launched - 11th March 2015
A new NIHR funded site has also been launched (11th March) (http://www.breathelondon.org/) which will facilitate community groups performing their own air quality research with academic support. As part of this activity Diana Silva (PhD studentship sponsored by Economic and Social Research Council and ClientEarth) will investigate how personalized air quality measurements can be used to influence public behaviour and evaluate how individuals disseminate information and outcomes with other members of their community.
Health under the flight path - Nature podcast - 10th February 2015
Dr Anna Hansell appears on this weeks Nature podcast discussing how noise can affect health.
Scamp Study launched - May 20th 2014
SCAMP is a cohort study which will follow several thousand secondary school pupils across London from year 7 through to year 9. The aim of this study is to investigate whether children’s use of mobile phones and/or other technologies that use radio waves e.g. portable landline phones and wireless internet, might affect their cognitive or behavioural development e.g. attention, memory, language understanding. SCAMP will be the largest study in the world to date to address this important research question. Coverage of the launch was reported in over 100 different newspaper articles, radio shows and national and international TV programmes (120 USA local TV stations). The Study interactive website & education resources for parents and pupils was developed and refined with feedback from parent/child focus groups, with feedback surveys and focus groups especially designed to focus on the biomonitoring validation enhancement funded by the HPRU. The Study team includes two head teachers as collaborators, with school invitation packs and FAQs developed with collaborating head teachers. This undertaking directly addresses one of our key PPI/E aims: to develop the scope of our interactive education activities.
- 2015/16 - Year 2 Accomplishments
Year 2 Accomplishments
Working with other PPI/E providers within NIHR funded HPRUs and BRCs we have developed a strategy document, identifying 7 key objectives for delivery over the short to long term lifetime of the HPRU. These objectives include:
- embedding PPI/E activities across each thematic area within the HPRU;
- to build PPI/E capacity through training;
- to provide support to patient/public representatives through educational resources to enable them to engage with scientists on public-directed research;
- to present work directly to the public through science events;
- to undertake research into the effectiveness of our communication strategies;
- to develop PPI networks/forums to ensure a common approach to PPI/E, sharing of resource and best practice;
- to evolve the evidence base for effectiveness of PPI/E in the public understanding of environmental health issues.
To achieve these aims we have established a PPI Strategic Oversight Group including lay member(s) and PPI Leads from across each theme, under the overall leadership of Mireille Toledano.
Members of this board have met throughout the year to discuss progress and to receive expert guidance from invited experts within the field of PPI/E provision, including Dr Markella Boudioni (NIHR Imperial Biomedical Research Centre (BRC) & Patient Experience Research Centre PPI Lead) and Robin Clarke (Sciencewise). Mireille Toledano and Ian Mudway have also attended NIHR sponsored events to help refine PPI/E activity across NIHR funded bodies. Below we have provided selected highlights of patient/public involvement, engagement and participation over the last year by category and across the units themes.
Patient and public involvement
- Members of Themes I (review of bioareasols work, Feb 2016), III (SCAMP study, Oct 2015) and IV (PPI/E strategy, Oct 2015) have presented to the MRC-PHE Centre for Environment and Health Community Advisory Board, which has a lay membership including local councillors, science communicators (sense about science), interested NGOs (mobile operators association, Heathrow Association for the Control of Aircraft Noise, Conservation of Clean Air and Water in Europe, Environmental Services Association) and patient/primary health care representatives. This forum acts as a means of refining messages for dissemination to the public and allows the board membership to comment and actively participate in ongoing research. Although initially formed to review MRC-PHE Centre activities this board has now expanded its remit to consider work aligned with the HPRU. PPI activity is also evident in the ongoing work in Theme I on CO exposures and poisoning, where there is active communication with CO Gas Safety and CO Awareness NGOs, as well as family members and friends of CO poisoning victims. Through these relationships Theme I have been able to communicate research progress whilst reflecting public concerns about this issue. These interactions have also helped refine public health surveillance and tracking focused on CO aimed at preventing both exposures to CO and its impacts on health.
- Theme III continues to work closely with parents and pupils to develop interactive web-based education resources to support the SCAMP study (http://www.scampstudy.org/ ), especially in the last year to promote participation in the Biozone activities. The Study team includes two head teachers as collaborators, with school invitation packs and FAQs developed with collaborating head teachers. SCAMP school visits have provided many opportunities to discuss the impact of various exposures on health, with the children (and teachers) recruited to the study; we have also conducted ‘Q&A’ sessions with the children.
- In Theme IV the NIHR funded Breath London (http://www.breathelondon.org/ ) continues to promote moderated citizen science projects based on the access to personal air pollution monitors, under the direction of members of the general public. In the last year this has included the Euston to King’s Cross Wellbeing Walk, initiated to identify low pollution routes between Euston and King’s Cross stations. As a result Urban Partners, a local business improvement group, have created a signposted, quieter, alternative route between the two stations set one block back from Euston Road.
- The Harwell Science and Innovation Campus open day (8th-12th July, 2015) allowed HPRU members to showcase their research (http://harwellcampus.com/come-to-harwell/open-days/ ). During the open week between 15-16,000 members of the public visited the site, with approximately 1500 school children visiting on the ‘schools day’. The HIEH stand highlighted projects in the work areas of ‘Particles and You’, ‘Ensuring a good start in Life’ and ‘Affairs of the Heart’. Posters were displayed and there were heart related experimental exhibits, nanoparticle cosmetics (Theme II and IV), and lots of carbon monoxide giveaways including mugs, pencils and colouring books, explaining the risks of CO (Theme I)
- In Theme I, Pippa Douglas was invited to speak on the HPRU bioaerosols work at the Health and Safety in Waste Management conference (16th July 2015, Kenilworth), organised by the renewable energy association to an audience of site managers, local authorities and consultants.
- Members of Theme IV have been highly active in providing talks to members of the general public and air pollution stake holders (Routes to Clean Air, Air Quality Conference 2015, 22nd-23rd October, Bristol; annual LAQN meeting, 2nd July; ) and have provided numerous media interviews over the last year, including extensive comment on the VW emission scandal, the UK’s non compliance with EU NO2 limit values and personal exposure monitoring: http://www.bbc.co.uk/iplayer/episode/b06q6nh2/panorama-the-vw-emissions-... (Panorama, BBC), http://www.bbc.co.uk/programmes/p037bmrq (Radio 5 Live), http://www.telegraph.co.uk/news/uknews/road-and-rail-transport/11880790/... (The Telegraph), http://www.thesundaytimes.co.uk/sto/news/uk_news/cleanaircampaign/articl... (The Sunday Times). Ben Barratt also engaged with the general public on air pollution issues through his involvement with the Clean Air for Communities steering group.
Unit members have been actively engaged in preparation of PPE events for the MRC Festival of Medical Research (18th-26th June). Through this initiative members across all of the HPRU themes have received PPE/I training for the delivery of a Life Bank event focusing on the health impacts of environmental hazards. Whilst this event is badged as an MRC event, we have sought and gained permission to use NIHR-HPRU branded material and aim to cover work funded under the HPRU
- 2016/17 - Year 3 Accomplishments
Year 3 Accomplishments
Our Patient and Public Involvement and Engagement (PPI/E) objectives are: (1) embedding PPI/E activities across each thematic area within the HPRU; (2) to build PPI/E capacity through training; (3) to provide support to patient/public representatives through educational resources to enable them to engage with scientists on public-directed research; (4) to present work directly to the public through science events; (5) to undertake research into the effectiveness of our communication strategies; (6) to develop PPI networks/forums to ensure a common approach to PPI/E, sharing of resource and best practice; and, (7) to evolve the evidence base for the effectiveness of PPI/E in directing public understanding of environmental health issues. These objectives and the rest of our PPI/E strategy document can be found on our website (http://hieh.hpru.nihr.ac.uk/our-research/ppippe), accessible to both researchers and the general public.
Our PPI Strategic Oversight Group includes lay member(s) and PPI Leads from across each theme, under the overall leadership of Mireille Toledano:
Theme I - Tony Fletcher (PHE) and Anna Hansell (Imperial);
Theme II - Tim Gant (PHE) and David Phillips (KCL);
Theme III - Mireille Toledano (Imperial) and Antony Young (PHE); and
Theme IV - Ian Mudway (KCL) and Rachel Smith (PHE).
Members of this board have met throughout the year to discuss progress and to receive guidance from invited experts within the field of PPI/E provision, including Dr Markella Boudioni (NIHR Imperial Biomedical Research Centre (BRC) & Patient Experience Research Centre PPI Lead) and Robin Clarke (Sciencewise). Below we have provided selected highlights of PPI/E over the last year by category and across the Unit’s themes.
Patient and public involvement:
PPI training has taken place across themes, in line with our second PPI/E objective. This training includes a screening of ‘People are Messy’, a Theatre of Debate film that engages its audiences in an informed debate around PPI and the social and ethical issues that it raises (May 2016), and PPI training to address the challenges of HPRUs at Imperial College London (July 2016), led by a past director of INVOLVE. Researchers have also attended Experience Matters workshops to build understanding of PPI in research (November/December 2016); one-to-one PPI coaching was also offered through the Imperial College London NIHR Patient Experience Research Centre, particularly to lab-based projects, as well as via MRC sponsored training, as part of preparation for their Festival of Science Event in June 2016. With regard to the third objective of facilitating public-directed research, members of Theme III (SCAMP study, July/August 2016) hosted two work experience pupils and gave science talks to a number of GCSE and A Level groups at SCAMP schools.
Additionally, focus groups with parents were held when first piloting the air pollution and traffic additions to the personal monitoring study. Focus groups and school Q&A sessions were also held to understand the effectiveness of SCAMP’s communication strategies. In Theme IV, the NIHR-funded Breathe London website (http://www.breathelondon.org/) continues to promote moderated citizen science projects based on the access to personal air pollution monitors, under the direction of the general public. This website allows members of the public to examine how to breathe cleaner air in different scenarios (eg. going for a run, on their commute and at work, and in their neighbourhood), enables easy access to the air pollution forecast and provides a route planner. If their concern is not answered through the website, they can propose a project of their own, with an easy and accessible form to fill in.
Furthermore, a joint Community Advisory Board (CAB) with the MRC-PHE Centre for Environment and Health provides another forum for PPI/E and engaging the public with scientists to facilitate public-directed research. The CAB includes Paul Braithwaite (Ex Chancellor of Camden Borough and clean air activist), Monica Robb (Heathrow Association for the Control of Aircraft Noise), Andrea Lee (Healthy Air Campaigner, ClientEarth), Jacob Hayler (Environmental Services Association (Waste Industry)), Emily Jesper (Assistant Director of Sense about Science) and Danny Ruta (Director of Public Health, NHS Lewisham). We are currently looking to add representation from other groups including the British Lung Foundation and the British Heart Foundation, and through these links patient representation. This CAB is one of the ways we are developing a forum to ensure a common approach to PPI/E, sharing of resource and best practice (objective 6).
In order to further engage the public, we have created a number of educational/information resources. The HPRU’s website (http://hieh.hpru.nihr.ac.uk/) provides information about the HPRU’s research activities, team, partners and events, and also has a specific page on PPI/E. This site has had 1,300 unique users since January 2016. Additionally, members of Theme IV launched the City Air mobile app at the end of 2016 as a tool for the public to try and reduce their exposure to air pollution; to date, the app has had over 4,700 users. Researchers across the themes have presented at science events including: From Black Cabs to Black Bogeys: Measuring London’s Air Quality (May 2016), Pea Soup House – with Royal Institute of British Architects (June 2016), and Human Sensor – with Invisible Dust (July 2016).
We also participated in the Environment and Health Question time at the MRC Festival (June 2016), regarding emissions from waste incinerators (Theme I) and air pollution and noise around Heathrow (Theme IV). The Question Time Panel included David Pencheon (Director, NHS Sustainable Development Unit), Caroline Russell (London Assembly Member and Councillor for Highbury East ward in Islington, transport spokesperson for the Green Party), Frank Kelly (Chair of the Committee on the Medical Effects of Air Pollutants, Professor of Environmental Health at King's College London), Sile Lane (Chair, Director of Campaigns and Policy at Sense About Science), Andrea Lee (Healthy Air Campaigner at Client Earth) and Tony Halmos (Director of the King’s Commission on London and a Visiting Professor at the Policy Institute, King’s College London).
Additionally, we presented at the Life Bank Science Exhibition (June 2016), which involved putting on an interactive science exhibition on waste noise, air pollution, the lung, electromagnetic fields and the exposome (covering all themes). The New Scientist Live event (September 2016) provided another opportunity to do engagement work across all HPRU themes, including radiation and epigenetics and UV, nanoparticles, environmental chemicals and air pollution to 22,000 people. This event will be repeated this year on a larger scale led from Theme II. Additionally, Theme IV researchers were involved in the Space to Breathe event (January 2017), presenting work on transport emissions and noise to the public through an event which championed creative action in response to London’s air pollution crisis. Thus, we have presented at a number of science events, delivering objective 4.
Members of the public are taking part in and having access to research across all four themes. This to date has mainly been via the air pollution (Theme IV) and EMF (Theme III) research, but discussions are ongoing to promote greater engagement across all of the HPRU themes
Therefore, this year we have delivered objectives 1-4 and 6, having made progress in embedding PPI/E activities across each thematic area within the HPRU; building PPI/E capacity through training; providing support to patient/public representatives through educational resources to enable them to engage with scientists on public-directed research; presenting work directly to the public through science events; and developing PPI networks/forums to ensure a common approach to PPI/E, sharing of resource and best practice. In the upcoming year, we will continue to expand our PPI/E in each of these areas, across all four themes. For example, we shall continue to achieve our goal of presenting our work to the public at prominent science events including the MRC festival, the Imperial festival and the New Scientist Excel event (including a confirmed lecture on air pollution and health).
We also aim to build capacity, create educational/information resources and undertake research into the effectiveness of our communication strategies through our public engagement proposal: “Is waste rubbish for your health?” This bid will focus on waste industry studies on incinerators, breast milk and biocomposting (Theme I). Furthermore, we are developing a cross-HPRU proposal: “Evaluating Public Perceptions of Biomarker Research in Environmental Health”. This will involve a Collaboration between the NIHR-HPRU’s in Health Impact of Environmental Hazards and Chemical and Radiation Threats and Hazards, the NIHR BRC Patient Experience Research Centre (PERC) at Imperial, and the Imperial and Partners PPI Research Forum. This collaborative cross-HPRU proposal will achieve objectives 5-7.
In an urgent new production by Camden People's Theatre in collaboration with King's College Lung Biology Group and students from Westminster Kingsway College, the critical condition and consequences of London's dirty air are explored onstage as the headliner of CPT's Shoot the Breeze festival. Directed by CPT artistic director Brian Logan, Fog Everywhere premieres a week after the Mayor of London introduces a new toxicity tax - the 'T-charge' - for vehicles that pollute the most, part of a wide-ranging set of measures to clean up London's air.
Annual Meeting 19th April 2016
The PPI/PPE presentation given by Dr Ian Mudway at the 2016 Annual Meeting is available here.
The 2014/15 and 2015/16 NIHR CCF PPI/E Annual reports are now available here.