Evolving service user involvement – next step, academic publishing

Service user involvement in research is now a well-accepted concept with a key emphasis in the community on how we can improve our methods and evidence base. Here, Peter Beresford discusses how service user involvement in research has evolved and, as part of our Open Access Week celebrations, BioMed Central announces the tweet chat “Academic publishing and patient/public awareness of research - two sides of the same coin?” #PPIpublishing

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Citizen involvement, including specific service user involvement, in research is perhaps the most important research innovation in the twenty first century.

Yet, there seems to be an irony at the heart of such participatory research. In its most developed expressions, participation does not seem to be its sole or main concern.

The emancipatory disability research developed by the disabled people’s movement offers us the first important insight here. Growing out of disabled people’s distrust of mainstream research, it took their participation as a necessary but not sufficient condition of research. What was crucial was that research should be concerned with their liberation.

Thus the degree of concern amongst service users and researchers is that in many cases conventional user involvement in research is more a matter of ‘box-ticking’ and is tokenistic.

Since then, the emphasis of user-controlled or user-led research, developed by wider movements of welfare service users, has been that they should be in control of research. While by some accounts they do not have to undertake all aspects of research, it should always come under their control.

Survivor research, that is research initiated and carried out by mental health service users/survivors has also placed an emphasis on the ethics of research, developing detailed guidelines for how such research should be carried out in a responsible and humanistic way.

What is also interesting is that less developed forms of patient and user involvement in research, particularly those emerging from the service system rather than service users themselves, seem to have placed a greater emphasis in principle on participation, but have often fallen short in service users’ eyes in practice.

Thus the degree of concern amongst service users and researchers is that in many cases conventional user involvement in research is more a matter of ‘box-ticking’ and is tokenistic.

I have had the opportunity to be involved in many different kinds of participatory research, including user involvement…

The point remains however, that while there are still big barriers in the way of user involvement in research – both because of the methodological challenges it poses and its continuing inferior access to funding – massive progress has also been made.

As someone who has worked to advance such involvement, in research and in policy and practice over my research career, this therefore still represents a ground-breaking achievement.

I have been in the privileged position of being both an academic researcher, and as a long term mental health service user, a service user researcher. I have had the opportunity to be involved in many different kinds of participatory research, including user involvement, both collaborative and user controlled.

I have seen more and more researchers become supporters and advocates of such involvement.I have seen a growing cannon of such research work, as well as the development of theory and methodology in this area.

I would like to see more large user controlled quantitative and mixed methods projects – to demonstrate that such involvement research is and needs to be seen as part of the mainstream. I think it is important that we develop our own ways of sharing both our work and our learning.

Research Involvement and Engagement represents an important milestone in this goal.

… I would like to see a wider range of service users… enabled to undertake their own research.

Meanwhile I want to see more service users who would like to, to have the opportunity to get research training, to undertake PhDs and post-docs and to have research careers.

I would like to see more mainstream researchers given the support they need to work in more participatory ways, which so often they want to – especially younger/newer researchers.

And I would like to see a wider range of service users, for example, people from the neuro-diverse community, older people and people with learning difficulties, enabled to undertake their own research.

Twenty years ago this would have looked a tall order. Now it seems like a realistic agenda for action.


Join our tweet chat

With this increased call for action, and as part of our Open Access Week celebrations, BioMed Central will be holding the tweet chat on Friday 23 October, 12:00-13:00 (GMT+1):

Academic publishing and patient/public awareness of research – two sides of the same coin? #PPIpublishing

We want to know how patients and the public envisage collaborations with publishers and what they would like to see from publishers as patient and public engagement and involvement in research evolves.

The tweet chat will be steered by @MedicalEvidence and supported by Editorial Board Members of our patient and wider public involvement and engagement journal, Research Involvement and Engagement.

The questions we will be discussing during the tweet chat are:

  1. As patients and members of the public, how do you find/access the findings from academic research?
  2. What should publishers do to make their journals and articles more accessible to patients?
  3. How can publishers engage patients and the wider public beyond journals?

To spread awareness or to join in on Friday 23 October, 12:00-13:00 (GMT+1), use the hashtag #PPIpublishing.

Also, if you can’t join, please tweet your questions to us throughout the week using the hashtag #PPIpublishing.

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One Comment

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Shahid Muhammad

1. As patients and members of the public, how do you find/access the findings from academic research?
I have been active in research for over a decade so quite fortunately this has also meant that I have been able to access/ identify relevant research related to my areas of intrigue either via fellow colleagues or by various databases such as PubMed/ EBSCO amongst others. Some published articles via these databases are also available for free, but it depends again if they are open access. I also use Reference Manager quite a bit and if there was a particular manuscript I am interested in; more often than not I would enter author details via that way and review abstract that way. I have also been part of (and in the present) part of panels where I tend to know what’s ‘happening’. I continue to present/ write research papers so that has helped over the years.

2. What should publishers do to make their journals and articles more accessible to patients?
This is a very interesting and important question, since most journals are either unheard of to patients or they genuinely are not able to understand what the context in front of them in a particular journal means. Publishers should perhaps think about using social media and have a group set up though the internet where they can provide some of the basic understanding of why patients should access journals with advantages/ disadvantages…..On the group I co-founded, one of the main admin members regularly posts research articles which lead to either full papers or articles relating to a given subject area, that being Chronic Kidney Disease (CKD). I have recently composed a collaborative paper relating to the Role of the Scientist in Community and presently exploring journals where this can be published and it’s a similar issue where patients/ general public may be completely unaware of the scientist’s role and in the same manner scientists themselves need to be more active to provide education and understanding on specific topics in community.

3. How can publishers engage patients and the wider public beyond journals?
Relating to the above, social media pages like Facebook and Twitter can be helpful to prompt publishers engage with patients/ carers and wider general public, however there needs to be more engagement at a ‘physical’ level too, so for example inviting patients/ general public at events like INVOLVE to understand what research is all about and the reasons behind articulating/ publishing. Health Literacy in the UK is/ can still be an issue where some papers published might just be a little overwhelming.

4. How important is publishing articles open access to patients and the wider public?
Where evidence-based context is/ has been published, I definitely agree that the public should have an understanding of what research has entailed and what more can be done to improve outcomes, both for patients and researchers. Publishing in open access journals in this respect is important because that way patients/ carers have the opportunity to access articles etc. but again the discussion comes back to the same point – there needs to be more engagement at a ‘physical’ level too, so for example inviting patients/ general public at events to get a more robust understanding of the wider aspects relating to research and why/ or why it should not be published etc. In a different context – if the general public have access to mainstream newspapers – then actually they should also have information relating to research. The Renal Patient Support Group (RPSG) is active on this front and it’s because of our admin/ team effort that over 6500 patients/ carers get a feel of how awareness and research meet.

Kind Regards,

Shahid Muhammad
Specialist Biomedical Scientist
Co-Founder and Chief in Research
The Renal Patient Support Group (RPSG)
A ‘Place’ where Awareness and Research Meet
Email: shahidmuhammad786@yahoo.co.uk
Email: rpsg1@outlook.com

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