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Knowledge is Power: Public perspectives on Open Access publishing

Published

04 September 2021

Version

1

Contents

Foreword

The public should be at the centre of our health and care research, helping shape, guide and disseminate it. This includes our approach to Open Access. I welcome this report, setting out the findings of extensive public engagement to inform the NIHR Open Access Strategy.

The engagement exercise revealed a keen public interest in accessing research findings. Access to research is important to the public as taxpayers, research contributors, evidence users and beneficiaries. Many people are struggling to access research articles currently behind paywalls, and there is strong public support for Open Access.

As respondents argued, researchers have benefited from patient and public involvement; it is now time for the public to benefit from the research. Knowledge is power, and it can help redress the power imbalance between patients and professionals when making decisions about their treatment. It can put public reviewers of research on a level playing field with their professional colleagues. As one respondent put it, without Open Access, “we only have half the story”.

But Open Access would not on its own be a complete solution. Other barriers to accessing research were highlighted. For example, many people have no idea about the existence of many research repositories. There will be a need to educate people about the world of scientific publications or we will perpetuate an exclusive culture. Digital exclusion is a fundamental barrier. An article may be freely available digitally, but this is no help to someone without online access.

Language and the presentation of findings can be barriers. Many research papers use highly technical and complex language. Most people would have difficulty understanding them or relating them to their own lives. At the Centre for Engagement and Dissemination (CED) we are trying to address this through our plain English summaries of research funded by NIHR (Alerts).

Commentaries from the public accompany the Alerts to help people make sense of them. But, the Alerts are currently in English. Respondents highlighted the importance of ensuring that underserved communities, including those for whom English may not be their first language, can access research findings.

This report contains important messages for NIHR and those of us working to make research findings more accessible to the public. It shows that removing a paywall is essential but insufficient. Access has many dimensions. If we are to promote it fully, they all need to be addressed.

Candace Imison
Associate Director of Evidence and Dissemination
NIHR Centre for Engagement and Dissemination

Executive Summary

Open Access makes published academic research freely and permanently available online to read and reuse. The results of scientific research are published in peer-reviewed journals (Peer review is the process of subjecting an author's academic work, research, or ideas to the scrutiny of others who are experts in the same field, before a paper describing this work is published in a journal, conference proceedings or as a book) and on online platforms to share the results with other experts - these results can then be built on by other researchers working in these areas. It also allows the sharing of scientific research to a broader audience.

In Autumn of 2020, the Department of Health and Social Care (DHSC) ran a consultation to inform the development of the NIHR Open Access Policy. The proposed policy sets out the support and expectations of the NIHR for NIHR-funded research findings to be immediately and freely available to read and reuse. The consultation gathered views from a wide range of stakeholders - individuals, groups and organisations - including members of the public. Public voice has not always been central to debates about open access publishing in health and care research, despite strong public interest in access to research findings - as tax-payers, advocates, research contributors and participants, evidence users and beneficiaries. As such, DHSC was particularly interested in capturing a diversity of public views to understand how research can be better accessed to maximise its reach, value and impact. To gather perspectives and experiences of the public on open access and the proposed NIHR open access policy, a mixed-methods approach was conducted using both workshops and an online survey.

Overall, public respondents were strongly supportive of the principles of open access. Starting from the notion that knowledge (from research articles) empowers individuals to be part of research, enhances their experiences when contributing to research processes or increases and informs their participation in health decisions - there was agreement that access to publicly-funded research is a public right. Whilst strong advocacy for free and immediate access to research findings was evident, the need for some flexibility around this was also recognised.

86% of public survey respondents reported having encountered problems in accessing research articles and 92% of public respondents agreed that they would be more likely to read or use research articles if they were immediately available and free of charge. Those involved in shaping, conducting and assessing research reported accessing research articles more often than the general public, and differences were also found in what types of articles are accessed.

Public respondents recognise the benefits of the proposed open access policy and agree that the major drawback of not having open access is the resulting knowledge imbalance, as the public are often at a disadvantage because they have the least access to original research articles. Public respondents agreed that regardless of the final details of the policy, terminology and scope needed to be clearly stated. Public participants and respondents were also concerned about cost and the sustainability of open access, with about 63% of public respondents in the survey supporting the use of restrictions on the types of open access publishing that it will support. Public respondents often did not know or had no opinions on more technical aspects of the proposed policy (for example copyright licenses).

Public views were concerned not just with the challenges to open access but stated the importance of understanding and addressing wider accessibility issues, such as IT skills required to navigate the publishing platforms as well as discoverability of the content (e.g., what to access and how to use the information), language barriers, and sustainability costs. Potential solutions suggested by public participants at the workshops included ensuring all NIHR public contributors have access to original research articles, using the most appropriate places and methods for communication, as well as providing training, support and advice on not only how to discover and access research articles but also how to understand the information presented. Ultimately, members of the public had valuable insights into how open access of research can better serve public cohorts, increasing the value of the research itself.

"Open access shouldn't only be about bringing down paywalls or building repositories for green access - it is about how the public experience research, understand scientific concepts, and apply the evidence in the context of their own lives. Open access is therefore both an active process of enabling physical access to NIHR research outputs, but it is also a deeper process of supporting access to the technical and conceptual aspects of research. (‘Green’ open access is a term used when a copy of the research article is made freely available via an online storage space known as a repository)."

- Public contributor, Workshop

Full report: Public perspectives on Open Access publishing

Background

In Autumn of 2020, the Department of Health and Social Care (DHSC) ran a consultation to inform the development of the NIHR Open Access (OA) Policy. OA makes published academic research freely and permanently available online to read and reuse (see Appendix A for more detailed background on OA). The consultation gathered views from a wide range of stakeholders - individuals, groups and organisations - including members of the public. Public voice has not always been central to debates about open access publishing in health and care research, despite strong public interest in access to research findings - as taxpayers, advocates, research contributors and participants, evidence users and beneficiaries. As such, DHSC was particularly interested in capturing a diversity of public views to understand how research can be better accessed to maximise its reach, value and impact. This paper presents public perspectives and experiences on open access and the proposed NIHR open access policy.

Method

  1. Workshops

    A workshop was developed by the cross-NIHR open access working group, with input from an experienced NIHR public contributor who subsequently co-chaired the workshops. The workshop was run twice (three days apart) and was informed by existing evidence, emergent policy position and the NIHR Public Partnerships Programme Board.

    Recruitment and invitation: An open invitation for the workshops was publicised on the NIHR website and publicised through existing NIHR public partnership communities/networks and relevant social media channels (NIHR twitter posts and the NIHR website). Sixty spaces (30 places for each date) were assigned on a first come first served basis. Background reading was provided in advance of the workshops.

    Consent: Before the meeting, participants were told that the workshop would be recorded for data analysis purposes and that the findings would be written up and this was verbally reiterated at the start of the workshop.

    Workshop delivery: The two online workshops were delivered on Zoom in which public contributors and general public were asked to discuss two broad questions around experiences of open access within 4 to 5 small break-out groups of 5 to 6 participants. Break-out groups were facilitated by leads in open access or public partnerships across the NIHR. All attendees and facilitators came together after the breakout discussions and each facilitator summarised the main discussion points. The breakout groups and summaries were recorded on zoom for analysis purposes.

    Emails from workshop participants: Public contributors were also provided with contact details in case they wanted to email any further comments after the workshops. Emails received following the workshops were collected for analysis.

    Analysis: Recordings, notes from the facilitators, and follow up emails were analysed using thematic analysis. Three researchers coded the different breakout sessions. The researchers grouped these codes into meaningful categories. The categories were discussed and using an iterative process were combined and refined into themes and subthemes. All researchers agreed on the final seven themes presented here.

  2. Survey

    Development and design: A survey design was used to gather quantitative and qualitative information about stakeholder opinions on the proposed NIHR open access policy. The survey, developed in google forms, used closed, tick-box questions and open (free-text) questions and was delivered online in order to have a broad reach. The survey was developed by the cross-NIHR open access working group and refined through an iterative process and in consultation with a broad range of internal (NIHR) and external stakeholders, which also tested the face validity of questions, in particular language, comprehension and completion time, and the construct validity of the questions and response options. The final survey consisted of 52 open and closed questions, and respondents were only presented with questions that were applicable to them.

    Survey delivery: The survey was launched on the 29th of September 2020. It was open for 6 weeks on the NIHR official website, and was promoted using the NIHR website and existing NIHR public partnership communities/networks, relevant social media channels, and during the workshops. The survey was open to all.

    Analysis: Descriptives were provided for closed questions, and open questions were analysed using thematic analysis. Data was coded into meaningful codes, which were grouped into high-order themes through an iterative process. Whole responses and part responses could be coded to more than one theme or subtheme.

Results

The following results present integrated findings from the workshops and survey data. Fifty-nine public contributors and members of the general public attended the workshops and there were an additional four follow up emails from public contributors who had attended the workshops. From 414 survey responses, 24 were members of the public and 15 were NIHR research participants or public contributors. However, as the survey and workshops ran in parallel, some members of the workshop may have contributed to both. For narrative purposes, the findings are described under the key themes that emerged from the workshops plus an additional theme which incorporates the specifics of the policy. Figure 1 shows the six overall themes, and how they link together. Quotes are written verbatim.

Figure 1: how the themes link together

Figure 1: Thematic framework for public perspectives on open access

Figure 1 shows a thematic framework for public perspectives on open access. A box diagram arranged vertically shows how the themes link together. Theme ‘Knowledge is power’ links to ‘Support for open access’ and ‘Benefits and impact of open access’. ‘Support for open access’ also links to ‘Benefits and impact of open access. ‘Benefits and impact of open access’ links to ‘Challenges and barriers to accessing research articles’ which in turn links (although not as directly, indicated by a dashed line) to ‘Challenges to wider knowledge accessibility’. Both ‘Challenges and barriers to accessing research articles’ and ‘Challenges to wider knowledge accessibility’ link to ‘Potential solutions’.
Each theme is described in detail in the text.

Knowledge is power: why the public access information

The workshop data suggests that health research is accessed for many reasons. This included personal health or caring roles which informed decisions and understanding, and helped with shared decision-making.

"[..] in future your NIHR policy will definitely benefit people like myself who need to look up recent research"

- Public contributor, Workshop

"Certainly I want to have proper discussion with anybody I see about whatever is going on with my body, and say ok what's going on, I want to understand it, what's normal what's not normal, what can I do and then I can go away and think about what I do in terms of what they want me to do but then also can go away and look stuff up and I think that we are at that point now where we are at hopefully in partnership with our clinicians and anybody else."

- Public contributor, Workshop

In addition, workshop participants indicated that they accessed research for public contributor roles (such as a reviewer, committee member or researcher) and to find out the research findings from research they participated in (to close the research circle from participation through to dissemination).

"I am a member of the [name of committee] and one of things we have to look at when we are assessing applications is what research has been done, how similar it is, what the context is."

- Public contributor, Workshop

"NIHR researchers have benefited from PPI (Patient and Public Involvement; also referred to as PPIE (Patient and Public Involvement and Engagement)) - I believe that it is now important to close the cycle of learning and share the added value of public engagement through better public digital open access (as well as more inclusive forms) to the knowledge that is created, and better support for the public to understand the meaning and implications of research evidence in the contexts of their own lives." 

- Public contributor, Workshop

The survey showed that public respondents found all types of publication useful, except for pre-prints (see Appendix B - Table 1). NIHR research participants/public contributors were more likely to find peer-reviewed primary research articles and review articles useful (100%) compared to 58% of members of the general public. The survey showed that NIHR research participants/public contributors access research articles at least once a week (53%) or once a month (33%; see Appendix B - Table 2). In contrast, members of the general public are more likely to access research articles once a month (38%) or less (38%). Overall, public workshop participants and survey respondents did not want to pay for access to articles, “I'd not be interested in anything charged for” (Member of the general public, Survey), although some members of the general public reported that they had paid for access or accessed articles using an NHS subscription or library service.

The majority of public respondents agree (64%) that self-archiving of the author's accepted manuscript in a repository (an online archive of academic outputs) is an acceptable route to achieve open access, although 31% did not know (see Appendix B - Table 3). In addition, the majority of public respondents agreed (67%) that NIHR should mandate the use of Europe PMC (a repository for biomedical publications and preprints) for achieving open access through self-archiving, but about a quarter don’t know whether this should be mandated (see Appendix B - Table 4). This is consistent with respondents being most likely to access research articles on PubMed Central or Europe PMC (see Appendix B - Table 5).

Support for open access

The findings from the workshop and the survey indicated that members of the general public and NIHR research participant/public contributors were strong advocates for free and immediate access to research. Members of the general public (83%) and NIHR research participants/public contributors (100%) also agreed that they would be more likely to read or use research articles if they were immediately available and free of charge (see Appendix B - Table 6).

"The most important thing is the principle of ‘nothing about us without us’ and that people have access to knowledge that affects them as soon as possible - costs and profits aside." 

- Public contributor, Workshop

"Information of this kind should belong to us all, does belong to us all. There is no question of this I don't think."

- Public contributor, Workshop

"The main thing that came across in the Zoom consultation meeting was the high degree of support for the NIHR open access proposals." 

- Public contributor, Email

"However, there was some question over what immediacy meant. It was suggested in the workshops that some stakeholder groups should have more priority than others (such as clinicians), and one member of the general public saw “no need to block short embargoes, up to, say, a couple of months."

- Member of the general public, Survey

"It depends how timely my question is that I want to find the research to, isn't it, do you know what I mean. You know, tick tock, tick tock, on your own body you probably think 12 months is a long time and something like COVID which is incredibly fast moving 6 months to 12 months makes a big difference doesn't it, but something less fast moving, perhaps less so." 

- Public contributor, Workshop

"[..] but if there is research that to suggest a drug will improve my quality of life, I want my clinician to be aware of it."

- Public contributor, Workshop

Public respondents also reflected on the proposed implementation date of the policy. Whilst 38% of respondents agreed with the proposed implementation date of ‘on or after the 1st April 2021’, 46% of respondents indicated that they would prefer a more ambitious, earlier implementation date (see Appendix B - Table 7). Potential consequences of the proposed implementation date highlighted by respondents included scope creep, fewer applications, and concern over demand for research before the proposed date, indicating the need to consider overlap of the open access policy with other healthcare events.

"Can't justify waiting till 2022. And will it be retrospective too (so older material be available)"

- NIHR research participant/public contributor, Survey

"Why wait? If there are fewer bids to NIHR because the outcomes will be open access, good - it's so painful having to reject so many bids because of insufficient funds!"

- Member of the general public, Survey

"[…] but am concerned that the Personalised Care Programme recently launched by NHS England may increase demand for relevant new research findings for individual patients before the proposed NIHR OA policy start date in 2022."

- Public contributor, Email

Overall public respondents agreed that the proposed scope was clear (mean score = 3.9) and appropriate (mean score = 3.9), although responses ranged from 1 (strongly disagree) to 5 (strongly agree) (see Appendix B - Tables 8 a) and b)). However, public respondents reported the need for more clarity in terminology and for which type of articles or research outputs would be considered in scope and out.

"I am in favour of everything being freely available particularly in the science and research areas. I believe that knowledge should be freely available to everyone for review and this must be beneficial to all."

- Member of the general public, Survey

"It sounds very useful, too often research is hidden away."

- NIHR research participants/public contributors, Survey

"Not clear what majority NIHR funded means."

- Member of the general public, Survey

"NIHR funding is public money, and access to ALL primary research should be freely available to those paying taxes. Please do not focus on peer reviewed articles/items only... it is extremely important to have access to material that challenges the status quo…" 

- Member of the general public, Survey

Even though a third of respondents felt they did not know enough to comment, about half of respondents agree that NIHR should require authors (or their institutions) to retain copyright - authors control how their articles are used, and by whom, through a type of licensing agreement - for research articles in-scope of the policy (see Appendix B - Table 9).

Benefits and impact of open access

From the survey, public respondents think that there will be only positive (64%) or positive and negative impacts (21%) as a result of the proposed policy principles (see Appendix B - Table 10); however, NIHR research participants/public contributors (80%) foresee more positive impacts than the members of the general public (54%).

The main consequence to come out of the workshop on open access was the issue of knowledge (which also related to power) imbalance. Public participants reflected that without open access the public were often at a disadvantage as they had the least access to all original research articles.

"If we are doing peer reviews, we only have "half of the story" and having info might add to our understanding of reviews and perhaps shift mindset" 

- Public contributor, Workshop

"The expectation is, rightly, that you should be able to help yourself a lot of the time but only if you have got access to the proper information." 

- Public contributor, Workshop

Public participants also reflected on potential unintended consequences or risks of not having immediate access to research, including the public accessing less reliable sources or not being able to use the research for health decisions.

"Now that everything is fast now, it’s essential that it is immediate. Publications are so slow, so it’s absurd that you then have to wait 12 months, so people go to things that are accessible, same as media, they will go where it is easiest to get the information." 

- Public contributor, Workshop

"However, there is a knock-on effect - impossible for researchers to keep up - takes years and years, it’s essential that it is open and available to all. The specialists can’t even keep abreast with the level of information and what’s going on. Healthcare could be improved faster if access to the research earlier-sometimes it’s not accessible even for GPs, don’t get to read it, could affect how they treat their patients - direct impact on care." 

- Public contributor, Workshop

They also reflected that there were resource implications with respect to financial costs of paying to read articles as well as the time it takes to find and access articles.

"Poverty of knowledge as well as financial if you have to pay." 

- Public contributor, Workshop

"I read summary articles that saved me a lot of time but I was at a disadvantage because I did not have a paid subscription to the main academic journals where clinicians, academics would write and publish these articles on these health topics." 

- Public contributor, Workshop

"It's time consuming." 

- Public contributor, Workshop

Challenges and barriers to accessing research articles

Challenges and barriers around accessing research articles were raised both in the workshops and in the survey. These related both to current challenges and barriers as well as to those that open access could alleviate or create. From the survey, the majority of members of the general public and NIHR research participants/public contributors (86%) have encountered problems in accessing research articles (see Appendix B - Table 11). One barrier to accessing research articles was paywalls.

"articles/ journals vs A pressing need to access new research into a condition/ disease/ undiagnosed – being held back by paywalls is a considerable challenge and immediate open access would make a huge difference to those lives." 

- Public contributor, Workshop

"[Paywalls] are a way to make money with the result that they limit access because the vast majority of people don’t want to pay to read research articles or spend time going through an online payment process." 

- Public contributor, Workshop

Indeed, the public contributors stated that they often wanted to promote good papers but could not due to the fact that the articles were often behind paywalls and so many of their networks would not be able to access them.

"I often can't promote good articles I've read on Twitter because I read them through my institutional access and they will be behind paywall for others."

- Public contributor, Workshop

As well as reflecting on accessibility issues as a result of paywalls, workshop participants highlighted that digital barriers (e.g. IT skills) can be a key barrier to accessing research.

"...sometimes it’s available, sometimes it’s only available to people who have contracts, so if you don’t have a contract to work with the university then you won't get the library access. Even if you have library access, coming from it as a service user…I've forgotten how to use library access, I've forgotten how to access journals...I had to relearn it all to get back into understanding what I could do to actually get access."

- Public contributor, Workshop

"Understanding that access to the internet is also a barrier to accessing research publications as well as the skills needed to navigate to access even open research. Research may be open access but how can it be put in front of the right patients, carers and members of the public if they lack access or the ability to find such research?"

- Public contributor, Workshop

Knowledge and awareness of knowing where and what to access was also considered to be a skill, which could hinder some members of the public from accessing research articles.

"How can it be clearer what is and isn’t available for open access?"

- Public contributor, Workshop

"The vast majority of people have no idea about the existence of repositories, journals etc. For me there is an issue of educating the public about the world of scientific publications as well as educating the public about critical appraisal. Otherwise you just perpetuate an "entre-nous" culture."

- Public contributor, Workshop

Linked to this was knowing what makes a good source of information, with participants commenting that it was not only knowing where to get reliable information from but as importantly where to get reliable information that they could understand.

"[...] and shifting through the rubbish and the propaganda and getting to the point, to the stuff that's useful to the public." 

- Public contributor, Workshop

"To know where to get good research in language that they understand."

- Public contributor, Workshop

"Controlling how information gets viewed and used."

- Public contributor, Workshop

An additional challenge to be raised in the workshop was that of cost and in particular the trade-off between cost of research and cost of open access. Public participants were concerned that publishers may increase prices if they were aware the NIHR would pay for all publications to be open access and that paying for more open access articles to be published may reduce the NIHR budget that was available for research and NHS treatments. Linked to this, 63% of public survey respondents indicated support for the NIHR to introduce restrictions on the types of open access publishing that its funds can be used to support (see Appendix B - Table 12).

"If publishers know the fee to make open access is going to be paid for all NIHR funded research (or beyond) will they review their fee? is there a plan for discussion with publishers as part of this review?" 

- Public contributor, Workshop

"Open access has major cost implications for NIHR and research budgets that should be explored in more depth, e.g. using financial modelling and impact assessment of what covering the costs (of say 2) journal publications for every NIHR-funded study would actually look like for the public purse, and what will happen if publishers put their costs up. The goal to maximise the proportion of publicly-funded research that is freely available to all, is unlikely to be achieved by directing more publishing costs to commercial journals."

- Public contributor, Email

Less than 10% of respondents indicated that they thought specific user groups may be disadvantaged by the policy principles and only three comments were made which reported specialised areas, PPIE groups and socially and economically disadvantaged and under-served groups as being more likely to be disadvantaged by the policy (see Appendix B - Table 13).

A potential barrier to the open access policy is compliance. When asked for suggestions that may help NIHR to drive adherence with its open access policy, the majority of comments were around incentives and penalties: “Repercussions for those that don't adhere, especially if there is selection bias in publishing” (Member of the general public, Survey). In particular, members of the general public suggested that adherence could be linked to funding: “Make it a condition of funding” (Member of the general public, Survey). Methods for reporting were also suggested: “Oversight of how this is operating and regular review” (Member of the general public, Survey). It was also suggested that there should be processes for reporting non-compliance and that the NIHR should try to understand any non-compliance that occurs, “Asking for feedback about access problems from research community and the public” (Member of the general public, Survey).

Challenges to wider knowledge accessibility

Throughout the workshops there was an underlying question of what open access really means and a need for a common definition/understanding of open access. Public participants reflected that true open access should be about the wider concepts of how people experience research from participating to reading and understanding of published research.

"Open access shouldn't only be about bringing down paywalls or building repositories for green access - it is about how the public experience research, understand scientific concepts, and apply the evidence in the context of their own lives. Open access is therefore both an active process of enabling physical access to NIHR research outputs, but it is also a deeper process of supporting access to the technical and conceptual aspects of research." 

- Public contributor, Workshop

In particular, public workshop participants and survey respondents spent time reflecting on the wider research landscape and challenges to knowledge accessibility. The issue of understandability was a key area in this theme, with comments on the need for research to be more easily readable for better ease of understanding.

"Plain English is very important, how can research be accessed in a more understandable way?" 

- Public contributor, Workshop

"Research is practical and can only be practical if I can access it and understand what is said."

- Public contributor, Workshop

"It’s not just giving us access it’s giving us access that reflects certain disabilities that people have." 

- Public contributor, Workshop

From the survey, both members of the general public and NIHR research participants/public contributors highlighted the need for the use of lay language in published results.

"I have been pushing for open access in organisations which I work in for some years. What seems to me to be missing in the proposals is a requirement for researchers to submit comprehensible lay summaries as well as technical academic results which may not be understandable by lay readers."

- NIHR research participants/public contributors, Survey

"If NIHR expects authors to work with the open access policy, we potential readers should expect NIHR to freely circulate (eg monthly) lists of the papers etc with bibliodata and very brief but VERY GOOD lay summaries"

- Member of the general public, Survey

This linked to comments regarding the need for better practices to reach under-served and international communities.

"If the NIHR are going to do this then they must not forget how they are going to get to and attract the underserved people. It's not enough to just keep on doing what we are doing and assume that we're all computer literate, we're all understanding of a particular language, we don’t. It’s a multi-cultural society and our responses must be multi-cultural and I think the NIHR has a responsibility and a duty to ensure that underserved communities can also gain access to research findings." 

- Public contributor, Workshop

"How do we make sure that members of the public in that country also have access to this open access?" 

- Public contributor, Workshop

Some suggested that “not everyone wants open access” (Public contributor, Workshop), and that there may also be negative implications of having access to potentially very sensitive information about health conditions. Solutions to how to support public users with this were provided (see ‘6. Potential Solutions’).

"There are some ethical questions around having open access from a patient perspective if the news is going to be very grim"

- Public contributor, Workshop

Potential solutions

To address the power imbalance and help accessibility to research, potential solutions suggested by public contributors at the workshops included using the most appropriate places and methods for communication, as well as providing training, support and advice on not only how to access but also how to understand the information presented.

"It needs to be written in a much more accessible way. There is no reason for it to be inaccessible and the NIHR, I believe, should be in the business of almost requiring this from its researchers. Both as a way of ensuring that PPI is carried all the way through the research but also I think we have seen through the COVID pandemic how there is a hunger for good quality, accessible research and if this becomes an NIHR principle then i think it would do great things not only for the research itself but also for the position of the UK and leading on, if you like global understanding of research." 

- Public contributor, Workshop

"Public engagement can help to inform NIHR about points and places of public open access – NIHR research has a role to play in supporting public open access. The best places to do this are likely to be where people are open to learning and there is already expertise to facilitate research engagement e.g. museums, schools, universities, galleries, online courses, and public outreach activities. Many links are already being made through NIHR funded research at a project level – however public contributors are knowledgeable about national and international health and social care networks and can make suggestions about linking (e.g. NIHR Centre for Engagement and Dissemination) and spreading NIHR research to support implementation of open access policies for diverse public audiences." 

- Public contributor, Email

"The other part of all of this for me is about the literacy, the ability to find, to read, to understand, to make use of these. We need to think about voluntary organisations and the different levels of access here that we need to be thinking about and a good policy needs to take account." 

- Public contributor, Workshop

It was suggested that the NIHR could make more use of public contributors in achieving open access, “Agree we need a more open policy and would suggest making use of ppi groups to help achieve this” (Member of the general public, Survey) and also suggested that the NIHR should provide all NIHR public contributors with access to academic library services, so that they could have the same access to journal articles as others in similar roles on committees and as reviewers.

"To improve access to research articles for all of NIHR’s public representatives: There are hundreds of public representatives contributing directly to NIHR in various roles, including reviewing research proposals, ethics and outputs, as well as contributing to developing NIHRs institutional systems and processes. More needs to be done to enable consistent free access of NIHR’s existing public contributors to access journals as part of their role, learning and development, e.g. access to Web of Science. At the moment some individuals have access, others don’t, or access is limited to the time individuals are involved in specific projects rather than their role. A way around the issue has been to arrange honorary contracts with [name of university] or other host institutions, but not all public representatives want to have an honorary contract and it takes time for organisations to set this up. A central arrangement through [NIHR] for all public contributors would be fairer." 

- Public contributor, Email

Public contributors also suggested linking NIHR funded research findings to NHS online/app, creating an international repository, and learning from previous approaches and applying new approaches.

"Have NIHR looked at piggy backing research onto the NHS App?" 

- Public contributor, Workshop

"It doesn't matter whether we haven't achieved it in the past, we have to do it and we have to find new ways of doing it. I think excuses that say oh well we've tried are no longer valid, we really, really have to move forward. Then perhaps we wouldn't get the inequalities we found with COVID." 

- Public contributor, Workshop

"Solution - Where to go next? - to learn from what hasn't worked in the past - solutions to what can help in the future."

- Public contributor, Workshop

"There needs to be an international repository of a short description of all research being undertaken. I have been involved in research as a PPI and know that it is being replicated elsewhere." 

- Public contributor, Workshop

Discussion

Public workshop participants and survey respondents are supportive of the principals of open access. Starting from the notion that knowledge empowers individuals to be part of research, enhances their experiences when contributing to research processes or increases their participation in health decisions - there was agreement that access to research is a public right. However, whilst strong advocacy for free and immediate access to research funding was evident, some flexibility around this was also recognised. Public survey respondents agreed that regardless of the final details of the policy, terminology and scope needed to be clearly stated. Public workshop participants and survey respondents recognise the benefits of the open access policy and agree that the major drawback of not having open access is the resulting power imbalance created by the lack of access to knowledge. Public workshop participants and survey respondents were concerned not just with these immediate challenges to open access but stated the importance of understanding and addressing wider accessibility issues, such as IT skills, required to navigate the publishing platforms as well as discoverability of the content (e.g., what to access and how to use the information; digital and health literacy), language barriers and sustainability costs.

Ultimately, members of the public have valuable insights into how open access of research can better serve public cohorts, increasing the value of the research itself.

"Open access shouldn't only be about bringing down paywalls or building repositories for green access - it is about how the public experience research, understand scientific concepts, and apply the evidence in the context of their own lives."

- Public contributor, Workshop

Authors

Authors:
A. Recio-Saucedo, K. Meadmore & A.J. Blatch-Jones from the Research on Research Team (ror@nihr.ac.uk)
Open Access Working Group - any enquiries regarding this publication should be sent to: openaccess@nihr.ac.uk

Appendix A - What is Open Access?

Open Access makes published academic research freely and permanently available online to read and reuse. The results of scientific research are published in peer-reviewed journals and on online platforms to share the results with other experts - these results can then be built on by other researchers working in these areas. It also allows the sharing of scientific research to a broader audience.

This published research can sometimes sit behind ‘paywalls’- a method of restricting access to published research which is only made available via a one-off purchase or a paid subscription. Many journals have a subscription model, and research institutions (e.g. universities) pay for their researchers to be able to access journal articles - though sometimes these articles will become freely available later, i.e. 6 or 12 months or more after they were first published.

There is a growing demand for open access research articles, especially for medical and health and care related research, where the articles are published online in a way that enables everyone to read and reuse the content for free as soon as they are published. One way to achieve this - rather than readers paying for access to research articles – is the authors of an article will pay a publishing fee (often known as an article processing charge or an APC) to the journal and the journal will then make that article freely available to anyone who wants to read and reuse it (this is often referred to as ‘Gold’ open access). This cost is often covered by the research funder. An alternative approach is where a copy of the research article, often the Author Accepted Manuscript (known as AAM, this is a version of an article submitted by the author that has been through a peer-review process and accepted for publication, but it would not include the publisher’s typesetting), is made freely available via an online storage space known as a repository (an online archive of academic outputs. The collection can include publications in peer-reviewed journals, books and book-sections, technical reports, working papers, monographs, conference presentations, research data, audio and visual materials or any other research content that has some scholarly value.this is often referred to as ‘Green’ open access). This might be a repository held by the university in which the author is employed, or a repository which brings together open access articles in a particular theme. An example of this is Europe PMC – a repository for life sciences research. However, some journals will only allow research articles to be shared in such an open access repository after a certain period of time has passed since the article was first published (known as an embargo period). In the embargo period, only those with paid access can view the article. There are other available, though currently less common in the UK, open access models.

A fundamental premise of open access is an open copyright licence that is assigned to the research article, which enables others to distribute, remix, tweak, and build upon the licensed work, including for commercial purposes, as long as the original author is credited. Examples of such licences include the Creative Commons attribution licence (CC-BY), or Open Government Licence (OGL). Variations to these licences include a restriction on commercial reuse or on the distribution of material that has been remixed, transformed, or built upon. 

Appendix B - Tables of survey findings 

Theme: Knowledge is power: why the public access information

Table 1: What type(s) of publications describing research findings do you find useful?
Ways to access research articlesOverall (%)
(n=39)
Member of the general public (%) 
(n=24)
NIHR research participant/ public contributor (%) 
(n=15)
Peer-reviewed primary research articles  29 (74%)  14 (58%)  15 (100%)
Review articles, including systematic reviews  29 (74%)  14 (58%)  15 (100%)
Journal editorial/comment pieces  26 (67%)  16 (67%)  10 (67%)
NIHR communications and outputs (e.g., Alerts, Collections and Themed Reviews)  26 (67%)  15 (63%)  11 (73%)
Final reports, monographs and books  18 (46%)   8 (33%)  10 (67%)
News media, blogs or social media  28 (72%)  16 (67%)  12 (80%)
Preprints  4 (10%)  1 (4%)  3 (20%)
Table 2: How often do you access research articles that describe original research findings?
FrequencyOverall (%)
(n=39)
Member of the general public (%) 
(n=24)
NIHR research participant/ public contributor (%) 
(n=15)
At least once a week 12 (31%) 4 (17%) 8 (53%)
Once a month 14 (36%) 9 (38%) 5 (33%)
Less than once a month 11 (28%) 9 (38%) 2 (13%)
Never 1 (3%) 1 (4%) 0
Don't Know 1 (3%) 1 (4%) 0
Table 3: Where all of the policy’s criteria are met, do you agree or disagree that self-archiving of the author's accepted manuscript in a repository is an acceptable route to achieve OA? 
GroupNAgreeDisagreeDon’t know
Overall (%) 39 27 (69%) 2 (5%) 12 (31%)
Member of the general public (%) 24 16 (67%) 2 (8%) 6 (25%)
NIHR research participant/public contributor (%) 15 9 (60%) 0 6 (40%)
Table 4: In regard to achieving OA by self-archiving in a repository, our repository of choice is Europe PMC (rather than an institutional or other subject specific repository). Do you agree or disagree that the NIHR should mandate the use of Europe PMC for achieving OA through self-archiving? 
GroupNAgreeDisagreeDon’t knowNo opinon
Overall (%) 39 26 (67%) 3 (8%) 9 (23%) 1 (3%)
Member of the general public (%) 24 17 (71%) 1 (4%) 5 (21%) 1 (4%)
NIHR research participant/public contributor (%) 15 9 (60%) 2 (13%) 4 (27%) 0
Table 5: If you read/use research articles, how do you access them? 
Ways to access research articlesOverall (%)
(n=39)
Member of the general public (%) 
(n=24)
NIHR research participant/ public contributor (%) 
(n=15)
Via a university subscription or library service 5 (13%) 2 (8%) 3 (20%)
Articles on PubMed Central or Europe PMC 20 (51%) 10 (42%) 10 (67%)
Via journal publisher’s own website or platform 14 (36%) 7 (29%) 7 (47%)
Articles on a university/ institutional repository 8 (21%) 4 (17%) 4 (27%)
Via an NHS subscription or library service 2 (5%) 2 (8%) 0
Preprint repository 2 (5%) 1 (4%) 1 (7%)
Unpaywall (or equivalent)  12 (31%) 5 (21%) 7 (47%)
Pay to access and read individual articles 4 (10%) 4 (17%) 0
Other 7 (18%) 5 (21%) 2 (13%)

Theme: Support for Open Access

Table 6: If all research articles were immediately available free of charge would you be more likely to read/use them? 
GroupNAbout the sameMost areNoYes
Overall (%) 39 4 (10%) 0 0 35 (90%)
Member of the general public (%) 24 4 (17%) 0 0 20 (83%)
NIHR research participant/ public contributor (%) 15 0 0 0 15 (100%)
Table 7: Please select one of the following statements: (agreement on implementation date on or after 1 April 2022) 
GroupNI agree with the proposed implementation dateThe implementation date should be earlier than the proposed dateThe implementation date should be later than the proposed dateNo opinion
Overall (%) 39 15 (38%) 18 (46%) 2 (5%) 4 (10%)
Member of the general public (%) 24 9 (38%) 11 (46%) 2 (8%) 2 (8%)
NIHR research participant/public contributor (%) 15 6 (40%) 7 (47%) 0 2 (13%)
Table 8 a) and b): The proposed scope is clear and appropriate 

Question 32: the proposed scope is clear

GroupMeanMinMax
Overall 3.75 2 5
Member of the general public 4.2 2 5
NIHR research participant/public contributor 3.9 2 5

Question 33: the proposed scope is appropriate

GroupMeanMinMax
Overall 3.63 1 5
Member of the general public 4.27 2 5
NIHR research participant/public contributor 3.9 1 5
Table 9: Do you agree or disagree that NIHR should require authors (or their institutions) to retain copyright for in-scope research articles? 
GroupNAgreeDisagreeDon’t knowNo opinion
Overall (%) 39 19 (49%) 2 (5%) 13 (33%) 5 (13%)
Member of the general public (%) 24 11 (46%) 2 (8%) 7 (29%) 4 (17%)
NIHR research participant/public contributor (%) 15 8 (53%) 0 6 (40%) 1 (6%)

Theme: Benefits and impact of Open Access

Table 10: What impact do you foresee to you (or the organisation / community you represent) as a result of our proposed policy principles? 
GroupNNo impactOnly positiveOnly negativePositive and negativeDon’t know
Overall (%) 39 2 (8%) 13 (54%) 0 6 (24%) 3 (13%)
Member of the general public (%) 24 0 12 (80%) 0 2 (13%) 1 (7%)
NIHR research participant/public contributor (%) 15 2 (5%) 25 (64%) 0 8 (21%) 4 (10%)

Theme: Challenges and barriers to accessing research articles

Table 11: Have you previously encountered problems accessing research articles? 
GroupNNoYes
Overall (%) 39 8 (21%) 31 (79%)
Member of the general public (%) 24 6 (25%) 18 (75%)
NIHR research participant/public contributor (%) 15 2 (13%) 13 (87%)
Table 12: Should NIHR introduce restrictions on the types of OA publishing that its funds can be used to support? (Question 39)
GroupNYesNoDon’t knowNo opinion
Overall (%)  39 24 (62%) 7 (18%) 7 (18%) 1 (3%)
Member of the general public (%)  24   14 (58%)  6 (25%)  3 (13%)   1 (4%)
NIHR research participant/public contributor (%) 15 10 (67%) 1 (7%) 4 (27%) 0
Table 13: In your opinion, are there specific evidence user groups the proposed policy principles would disadvantage? (Question 46)
GroupNNoYes
Overall (%) 39 36 (92%)  3 (8%)
Member of the general public (%) 24  22 (92%)  2 (8%)
NIHR research participant/public contributor (%) 15 14 (93%) 1 (7%)