Thursday, July 23, 2015

Identifying and recruiting participants for health research

A public dialogue for the Health Research Authority

The Health Research Authority (HRA) in conjunction with Sciencewise commissioned OPM Group to run a public dialogue on identifying and recruiting participants for health research. The final report is available to download.

The specific objectives of the dialogue were:

1. To inform the development of the HRA’s new UK wide Policy Framework to replace the Research Governance Framework and its associated operational guidance.

2. To provide opportunities for members of the public and patients to discuss and explore their aspirations and concerns about the governance of health research in relation to recruitment, data and consent, especially:

a. How patient data might be used in order to invite people to join research studies and who participants think should be allowed to access patient records in order to check eligibility

Patient Record Access

 

b. Different models for approaching potential research study participants including consenting to being approached directly about research

Recruiting Patients For Health Research – Participant Vox Pops

 

c. The plan to develop simplified models of consent for simple and efficient clinical trials of already licensed drugs and other interventions in common use.

Simplified Consent

 

Wednesday, April 1, 2015

Tramlink extension to Sutton town centre Consultation programme

The London Boroughs of Sutton and Merton have an aspiration to extend the current Tramlink network from Wimbledon to Sutton town centre via Morden. To help inform a decision about the next steps, Transport for London (TfL) requested that the councils carry out a consultation to identify the general feeling in the community about the proposal. OPM Group was contracted to design and deliver this consultation programme in a short time-frame of less than 3 months in order to meet the TfL deadline of mid-September 2014.

We designed and produced engaging consultation materials including a dedicated website, response form, response postcard, posters, leaflets and banners. We also developed communication materials, including a press release, invitations to key stakeholders and social media updates. Throughout the 4-week consultation period we delivered a series of 10 successful exhibition events including both advertised drop-in sessions and local high street events to raise awareness of the consultation and encourage participation.

As a result we received over 10,000 responses. To respond to this very high response rate and still meet the deadline we quickly put together a team to analyse the responses using our bespoke system, and summarised the quantitative and qualitative data in a detailed report to the councils.

The summary report that we delivered to the councils was submitted to TfL in September 2014 and the feedback and insights from the report will be used to inform the next steps in the proposals. The councils are now awaiting the outcome of TfL’s decision.

Tuesday, March 17, 2015

25th anniversary guest blog series: A digital future for local government must be shaped by the communities we serve

I recently got into a mini spat on Twitter with a Member of Parliament who sits on the Speaker’s Digital Democracy Commission (DDC) before giving evidence at the House of Commons on the changing nature of representation in a digital age.

The MP in question had proudly tweeted:

‘Debate on @digidemocracyuk tomorrow! First time public allowed to text/tweet live from debate’

I couldn’t resist reminding said MP that since the involvement of the Department for Communities and Local Government Minister, tweeting from local government meetings is actively encouraged alongside Blogging and Vlogging and all associated acts of audio and video recording. This approach to digital contrasted sharply with my experience in the Committee room of the House of Commons, where the use of social media was otherwise prohibited.

Then a few weeks ago I found myself as part of a very earnest group of individuals looking at the possibility of a Local Government Digital Service. The debate centred on the lack of skills in local government and the need for a uniform approach to digital across the sector. I along with others in the room cried foul – the debate like so many before it was at risk of being dominated by those whose raison d’etre were the platforms and code that sit behind the systems we use.

Where was the voice of the user, the citizen, the resident at this meeting? Why were we looking at the nuts and bolts and not the shape of the services we provide? What are the needs and wants of the people we serve? Cue the predictable verbal navel gazing and the admission by some around the table that had been present at a similar meeting almost a decade before that perhaps this time the wrong people had been invited.

The link between these two stories is that central Government, in the first instance represented by the Westminster village heavy Digital Democracy Commission, and in the second by Government Digital Services and their acolytes, have tried to shape both the meaning and form of ‘Digital Democracy’ and the view of how local government should use digital.

As a localist I’m hopeful that digital will become an area where we see the accelerated departure of local from central government, but I’m not holding my breath. We remain one of the most centralised democracies on earth – Westminster politicians appear paralysed when reaching any decision that distinguishes between regions, while the devolution debate is framed either around English votes for English laws or massive combined authorities.

I believe there is a window of opportunity for councils to lay down their own digital future. If successful I hope this hastens a loosening of central control, but this can and should only happen if that digital future is shaped and formed by the communities we serve.

Peter Fleming is the Leader of Sevenoaks Council, Chairman of the Local Government Association’s Improvement Board and is the LGA’s National Lead Member on Welfare Reform. He also serves on the executive of the District Council’s Network.

Cllr Fleming was an expert contributor to the Speaker’s Commission on Digital Democracy and spoke at OPM’s Kai Rudat memorial seminar on The Role of Digital in Local Participation.

______________________

About the series

OPM is celebrating its 25th anniversary this year, and as a public interest organisation, we’ve always contributed to the debate about the future of public services.

With this and the next general election in mind, we’ve asked a number of senior thinkers to give their views on the challenges and opportunities facing public services and society in the near future.

This is one of a series of guest blogs, which we’ll be adding to in the coming weeks and months. To read previous posts in the series, go to our news and comment page.

 

Thursday, December 18, 2014

Does digital still have the potential to change local participation?

 

As soon as our scene setter Dr Andy Williamson challenged his fellow panelists to think about whether digital has lived up to the potential he saw, over a decade ago, for it to radically change local participation, it was clear that the promise still exists and remains unfulfilled.

Speaking at the Kai Rudat Memorial Breakfast Seminar, which this year focused on the the role of digital in local participation, Dr Williamson declared that the democratic system was, and still is, ostensibly broken. He argued that we have digitised these processes only to produce ‘broken digital processes’, and that as patterns of engagement haven’t changed, there is still an enormous disconnect between citizens, politicians and the civil service. Digital technology may have advanced, digital access may have increased, and digital literacy become more widespread, but digitising those existing models of engagement and participation has changed little and will continue to change little if they emanate from the centre. Instead, the role of any democratic institution, if it is truly democratic, is to allow the ‘outside’ to decide on their models of participation and engagement.

 

 

Digital can help break down barriers and silos by creating partnerships with groups and individuals previously disenfranchised, while rebuilding trust that has been lost in the system. But this won’t be possible without a fundamental cultural change to open up democracy from the outside in, the implementation of an ‘open data’ policy, or without addressing Dr Williamson’s figurative ‘elephants in the room’ – that of digital access (the 15-20% of the population who are not online, automatically excluded from any Government ‘Digital by Default’ strategy) – and digital literacy. Clearly, opening up participation through digital will be of no benefit if the population doesn’t have the means to access it.

This original diagnosis may have been somewhat depressing, but over the following hour our speakers rose to the challenge by showing the very appetite, on behalf of the local partnerships and intermediaries that Williamson spoke of, to allow digital to open up those channels of participation and engagement.

Each panellist recognised that digital engagement is a useful participation tool, as Cllr Peter Fleming pointed out, but not an end in itself. The ultimate outcome of digital engagement should be to inspire local participation offline, in the real world. The innovative case studies presented by the speakers of engaging very different constituencies were attempts to a greater or lesser extent to deploy particular digital channels, in Cllr Pete Lowe’s words, to ‘complement’ engagement, rather than replace it. All agreed that both online and offline engagement efforts must bring participation to where their community already is.

The staggering increase of participation in Dudley MBC’s council meetings, held either via Facebook (reaching more people in one hour than in 25 years of traditional community based forums), or through their 10 community run forums held where the community chooses (where more people attended in one year than had done so in the previous 10), were just a couple of examples of the value of facilitating participation – opening the doors to debate, rather than forcing it.

At present, patterns of local participation among the ‘digital native’ generation contrast sharply with those at the other end of the age spectrum. While according to Chris Martin from YouthNet, 98% of young people between the ages of 16-25 seek information on everything they do online, Sam Mauger from AgeUK London highlighted a discrepancy in digital access, as 78% of people in London aged over 75 are not online and more than 600,000 people over 55 have never used the internet.

Sam Mauger’s case studies were testament to the power of digital to empower those within Age UK London’s reach to participate in the community online, who would otherwise be considered ‘hard to reach’ offline. Both Chris Martin and Debbie Moss provided examples of where this digital native generation, despite common accusations of disengagement from ‘politics’ or their community, have been successfully engaged by YouthNet and vInspired through issues that are important to the young people themselves, not those dictated by organisations. Where digital is the likely start journey for everything that a young person does, that medium, as Chris Martin attested, almost becomes invisible.

The potential for digital to open up democracy and local participation still exists a decade on from Dr Williamson’s early observations, but this will only be possible once our democratic institutions, and its partnerships and intermediaries, commit to becoming community led and allowing digital to help with that engagement. As Cllr Lowe described, ‘democracy dies without community engagement’. Digital still does have the capacity to enable community engagement, but only if we let it.

______________________

Given the subject matter it seemed appropriate that there was a lot of Twitter activity during the event. Here are some of the highlights of the debate on the #digitalparticipation hashtag:

 

Wednesday, November 26, 2014

Recruiting Participants for Health Research Public Dialogue

Background

The Health Research Authority (HRA) in conjunction with Sciencewise commissioned the OPM Group to design and deliver a public dialogue on identifying and recruiting participants for health research.

The dialogue was designed to gather the views of the public on possible changes to the way individuals are identified and recruited for health research within England and Wales. Currently, few patients are told about clinical trials they are eligible for, a right outlined in the NHS Constitution. The HRA was interested in public perceptions of proposals to make it easier for patients to learn about relevant trials, potentially increasing the number of participants involved in health research.

The process was designed to engage members of the public and patients in order to inform the HRA in the development of a new Research Governance Framework and associated guidance to be published in 2015. These documents will advise research ethics committees and health researchers when identifying and recruiting participants for health research.

 

 

What we did

Members of the public and patients were invited to four reconvened workshops held in Liverpool, Nottingham, London, and Cardiff throughout November 2014. Via two evening workshops in each location over 100 participants and experts came together to explore topics ranging from who should have access to patient records, through to the concepts of simplified and zero consent. Presentations, case study examples, videos, and a play helped inform participants of the subject, empowering them to take part in complex discussions with other members of the public and experts.

In addition to the face to face deliberative process, the public dialogue was taken online via a bespoke website developed by the OPM team and a Twitter presence. The website provided the opportunity for members of the public to share their thoughts on a discussion board and via an online survey. While a Twitter account raised the profile of the dialogue, driving traffic towards the website and informing interested stakeholders about the ongoing project.

 

Impact

Our findings have yet to be published, but the outcomes of the dialogue will feed into the development of a new Research Governance Framework and associated guidance as the HRA becomes a non-departmental body in 2015.

 

HRA workshop website home page

Website homepage

Wednesday, November 26, 2014

Leap Seconds: UK Public Dialogue

Background

In 2015, member countries of the International Telecommunications Union will decide whether to maintain leap seconds, the mechanism by which clock time is kept in sync with solar time. In recognition of the potential cultural and technical impacts of this decision, the National Measurement Office (NMO) commissioned the OPM Group to run a public dialogue in the UK to advise the Minister as to whether the public felt leap seconds should be maintained or discontinued.

 

What we did

In order to talk to people across the United Kingdom, the leap seconds dialogue utilised a mix of methods from both stakeholder and public workshops through to a digital engagement process and pop-up dialogues.

 

Leap seconds stakeholder workshop image

Stakeholder workshop

 

At the end of April 2014, the OPM group held a stakeholder workshop to discuss expert opinions of leap seconds and think about the possible options for addressing any issues. This workshop informed the development of the remaining dialogue process, while also providing the views of stakeholders themselves on the topic at hand. A full report from the stakeholder workshop is available here.

Four reconvened public workshops were held throughout the UK in Belfast, Tamworth, Cardiff, and Edinburgh. In each location, a half day workshop introduced participants to leap seconds. Two weeks later, a full day workshop facilitated engagement around the possible impact of changes to the way we measure time. Stimulus materials including videos used at the workshops are publically accessible and can be found here.

 

Leap seconds web page screen grab

Leap Seconds: UK Public Dialogue website home page

 

To open the engagement process to everyone in the UK and align with the digital by default agenda, the OPM Group launched a tailor made website dedicated to the dialogue. It was designed to make the project as accessible as possible and remain as an open international record of the UK dialogue process. The website contained both a survey and a discussion board, allowing members of the public to learn about leap seconds and share their views. Almost 200 people took part in the survey, and the website itself attracted over one thousand unique visitors from across the world during the duration of the project. The website remains live as a resource for sharing information about both the dialogue process and the topic itself.

As well as recruiting participants to take part in reconvened workshops, the OPM Group took leap seconds to the public via a number of pop-up dialogues.

 

Leap seconds pop-up dialogue at the National Maritime Museum

National Maritime Museum pop-up dialogue

 

Impact

All elements of the public dialogue fed into a final report written by the OPM team in the summer of 2014. This will be used to guide and inform the UK’s position at the World Radio Conference in 2015 where a decision will be made as to whether leap seconds should remain or be discontinued. The UK is the only country consulting with the wider public as part of their decision making process in the run up to this event.

The final report and a video documenting the workshop process are available to view from our Library area and on the Leap Seconds website. The blog we wrote about the public dialogue is can also be viewed in the News and Comment section.

Wednesday, November 19, 2014

The role of Digital in Local Participation: Kai Rudat Memorial Breakfast Seminar

On the morning of Tuesday 25 November we are hosting a breakfast seminar on the role of digital in local participation, with speakers from across local government and the voluntary and community sector sharing their experiences of how they have used digital means to facilitate dialogue with citizens.

Digital presents an opportunity for local government and the voluntary and community sector to involve the public in decision making on their own terms, through channels that are less institutionally-focused and more citizen-driven. It offers the potential for citizens to engage and mobilise around local issues and local needs, opening up new virtual spaces for civil society where ideas can be proposed and discussed in an immediate and highly visible way.

Recent research however, has found that 11 million people in the UK still lack basic digital skills and capabilities. It’s hard to believe that in an age where the internet is at the heart of society, 21% of Britain’s population remains ‘digitally excluded’. This has a real social and human impact. But more people, networks and organisations having digital access will not be sufficient to re-energise local participation in itself. The digital approach sits within a wider engagement landscape and is just one of the tools which can cultivate active citizenship around local needs – both ‘online’ and ‘offline’.

During the event we will hear innovative case studies of how our speakers have engaged members of their respective constituencies and those sometimes considered ‘hard to reach’, often from the most vulnerable and disadvantaged groups. These examples of good practice and experiences of key challenges and barriers to a digital approach will be open to questioning and discussion with our audience.

Dr Andy Williamson @andy_williamson will shape the discussion for us. He has extensive national experience in digital democracy, online campaigning and citizen engagement and will be raising themes such as:

What do local leaders need to do to engage effectively in digital dialogue with citizens? Are there any features particular to localities with high levels of digital engagement and what are these features? How do we measure success in digital engagement? Where does the digital approach sit within the wider engagement landscape? What platforms are used, and are theses the right ones? Where both online and offline engagement methods are combined, have these complemented each other or is there a tension between the two?

Our presenters will be:

Cllr Peter Fleming  @dmontfort – Leader of Sevenoaks Council, presenter to the Speaker’s Commission on Digital Democracy, discussing the changing nature of representation in a digital age.

Cllr Peter Lowe  @CllrPete  – Deputy Leader of Dudley Council, the first local authority in the UK to bring public meetings to Facebook.

Sam Mauger  @ageuklondon – Chief Executive of Age UK London, deliverers of the ‘MiCommunity’ intergenerational digital inclusion project.

Chris Martin  @mondomartin – Operations Director of Youthnet, whose online digital service ‘TheSite’ is accessed by 85,000 16–25 year olds each month.

Debbie Moss  @vinspired  – Public Affairs and Policy Manager of vInspired, who have focussed on how digital plays a role in young people’s participation in political issues across a number of programmes, particularly through the recently launched ‘Do Something Swing the Vote’ campaign.

There are a limited number of places still available for the event via our Eventbrite page. Registration opens from 8.30am.  So book up now or follow the debate using the hashtag #digitalparticipation on Twitter.