Impact and Patient Involvement – what’s fair?

We all know public and patient involvement (PPI) is fundamentally important to health research, but what does it mean for impact? How does it challenge our simple definitions of impact? And how can we most meaningfully articulate the benefits of patient involvement in driving real world benefits?

Yesterday I attended a fantastic first meeting of the NIHR Working Group on Public Involvement and Engagement Impact. This group, convened and led by Simon Denegri (@SDenegri), is tasked with unpicking these and further issues around the PPI-impact link. Consisting of a wonderful assembly of PPI leads, impact people, Department of Health strategists and – most importantly – patient representatives, the working group is a space to challenge, agree, disagree, champion and have those vital lightbulb moments only possible through shared learning.

The working group leadership will draw together the broad and energetic discussions into some coherent summaries(!), but ahead of that, I think it’s fair to say:

  • There is HUGE commitment to meaningful patient involvement, and excellent work going on across the country to strengthen how this is done in practice
  • There is an undoubted challenge in knitting this together with the ‘impact agenda’ within the research sector, and a need to avoid simplifying PPI as just a pathway towards something measurable. PPI does something far more, has effects which are far less ‘tangible’, and cannot be decoupled from the value to patient, researcher and research alike.
  • Ultimately there is a moral and ethical right for patients (and their carers) to have their voice heard in research which affects them. We cannot and should not dilute their voice and instead need to look to our research processes to see where we can improve this relationship.

Where that gets us for impact remains to be seen. But I’m definitely looking forward to working it out.

Chasing the impact unicorn

Impact is big. Really big. You just won’t believe how vastly, hugely, mind-bogglingly big it is. I mean, you may think it’s a long way down the road to the chemist, but that’s just peanuts to impact.*

Nah.

Impact is change. Simples. We just want it to be mind-bogglingly and intergalactically big because REF and funders and careers and stuff.  But sometimes we need to just go back to basics and think about what change really means.  And what it means for those our work reaches.

Perhaps we need to stop chasing some fantastical possibility.

Perhaps we need to stop chasing some mythical impact unicorn.

If only someone could write a blog (for NIHR) on that oh no wait I have how handy go look here right now.

Enjoy!

* Kindly borrowed from Douglas Adams. I hope he’d approve

REF impact consultation 18/1/18: spoiler, no answers yet.

Yesterday I took part in a REF Impact consultation event in London. This workshop formed part of the broader consultation REF are undertaking with the sector to iron out some of the remaining issues following the ‘final decisions’ announced in November.  In attendance were several of the main panel chairs, sub-panel chairs, senior university staff and impact partners (eg. assessors from 2014)

The two key foci of this particular event were additionality (ie. how to accommodate continuing case studies) and expanding the underpinning research base (ie. addressing concerns over limiting case studies to a linear connection between ‘project’ and ‘effect’.  Let me start by saying immediately we don’t yet have the decisions about these.  The discussions reflected the complexity and implications surrounding these issues and doubtless REF have a huge job on their hands to wrestle with the breadth of feedback and areas of dissent.  This won’t be easy and it will have to balance a myriad of considerations.

However, several core messages came through strongly:

  • The REF team and main panel chairs were fully in agreement about their commitment to make the assessments fair and rigorous, and with recognition of the challenges/game playing last time.
  • There was general consensus that irrespective of whether something is continuing or not, the key question should be does it stand up as a case study in its own right?  Fairly ‘spirited’ discussions happened about how to articulate continuing impact, whether it should even be flagged, how it would be assessed etc. Ultimately everyone seemed to settle on simplicity and fairness being the main principles and that a continuing case study (or whatever it should be called) should be measured on its own merits.
  • The implications of broadening ‘underpinning research’ to loosen the linear connection between research and impacts and reflect a broader body of accumulate expertise were source of deep discussion.  There was real debate around where the lines should be drawn between broader research activities (not just for instance 2* papers) and those which are more engagement in character. Whilst superficially ‘broadening’ conceptually better values the academic lifecourse, it raises significant issues for assessment, judgement, and eligibility of materials for submissions.
  • All discussions reflected the broader sector and institutional challenges around impact management, assessment, narrative construction, implications for (eg) progression, incentivising short term vs long term impact and many other issues.
  • There is clear recognition that however ‘neat’ the decisions, these sit within a complex ecosystem and must be accompanied with clear guidance and underpinning principles. With institutional stakes high, and submissions so nuanced, text-only communication cannot ‘carry the burden’ of conveying such weighty expectations and must be complemented with broader communication and outreach.

The REF team will be holding several more consultations, and will be synthesising feedback into guidance following this. I don’t envy them at all, but after yesterday I’m convinced there is a real commitment to recognising – if not being able to fully accommodate – voices from the sector.

 

 

The psychology of being a patient with a chronic vascular condition. Or ‘the joy of DVTs’

Many of you will know about my health fun and games. And by fun and games I mean multiple deep vein thromboses (DVTs), those cocky little blood clots that keep colonising my left leg. The saga can probably be shorthanded to ‘9 years ago my veins decided that blood flow was overrated and shut up shop’.

Flippancy aside, the chronic pain and mobility difficulties have been horrendous, not to mention the impact on my family. And I’ve lost count of how many times I’ve ended up sobbing mid conference because of the pain of just ‘sitting’. Thankfully, overlooking the ‘unexpected clot incident of 2016‘, I’m generally far more mobile and my limp takes longer to kick in. And my walking stick now only gets broken out for special occasions.

Anyway fast forward to June 2017. I’ve been given the name of a fantastic specialist in London whose expertise may actually help fix me, when it seemed unfixable. (Spoiler, we still don’t know if it is, but let’s hope Thursday’s MRI scan shows something positive). I go for a consultation (which led to the MRI) and the discussion takes an unexpected turn. My consultant is concerned about how psychologically and emotionally difficult vascular problems can be for patients and and invites me (as a Health Psychologist) to help. Somehow.

The first step has been writing an invited commentary for ‘Venous News’, the professional magazine for vascular practitioners. This has been a chance to headline, as a patient and psychologist, the fallout of living with a long term condition. It’s a personal account, but far from unique and certainly mirrored across other conditions. I’m hopeful it helps build understanding of the invisible side of long term ill-health.

The opportunity to be able to use this pretty horrid experience, in a professional capacity, and maybe (*fingers crossed*) have some impact is a luxury many people don’t have.  I hope this is the start of a much longer journey to support patients and those clinicians who clearly care enormously about their patients’ welfare.

You can read the piece online (pg 10) or view as a pdf. Thanks to Mr Stephen Black and Venous News for the invitation.

For more information about DVTs check out @ThrombosisUK

“We’re more than REF people” – notes from the ARMA conference Impact SIG

Ok, so let’s just agree that my delay in writing up notes from the ARMA Impact SIG session again is an ‘endearing tradition’…….

Thanks to all of those who attended the SIG session at the annual conference in Liverpool this year.  Our impact community consistently showcases the collective experience, expertise and generosity which is driving impact and research management forward. It is always a pleasure to be part of those forums.

For those who weren’t able to join us, after a short presentation by Lizzie and myself on sector drivers, challenges and opportunities for impact, the assembled impactors (is this a word? *if not quickly coins*) discussed a range of issues for impact management in the current UK climate. Click here to read the full ARMA SIG 17 Discussion notes, but by way of summary:

  • In line with last year’s discussion, there is still a sense of poor recognition of the skills and expertise needed for impact. This continues to be compounded by eclectic job titles, job descriptions and role scope, alongside the common burden of being ‘stretched’ across the university to hunt down ‘nuggets‘ of impact gold.  There is an ongoing need to resource a stronger infrastructure within institutions to both ensure adequate provision is in place, and allow space and time for impact staff to develop.
  •  A common theme was the wish to drive home the message that impact managers are ‘not just REF people’.  Nor are they just nagging secretaries. Listening to SIG discussions, the professional resolve to ‘make research useful’ is continually and abundantly clear. That doesn’t mean the community’s eye isn’t on REF (how could it not be?), but that we are impassioned and committed to something more fundamental than a seven yearly assessment cycle. Perhaps our branding needs work……
  • The changeable research landscape presents challenges for establishing impact goalposts and engaging academics into the process. Whilst we now know more about REF2021, the fairly consistent picture painted about small, organisationally dispersed impact provision suggests that our institutions are not agile.  Given that we can’t just sit waiting for new rules, we must revisit our institutional set up and consider how to most effectively continue to operate and shift gear in response to sector changes.
  • Information management continues to be an issue, and whilst different universities are investing in different solutions, there remain issues for understanding what constitutes impact ‘data’, the skills needed to appraise impact related information and technical interoperability.  Activities to support this are ongoing, with a particular shout out to CASRAI (*holler*) for their work on harmonising impact information standards. Watch this space for updates….
  • Improving impact literacy and impact culture in organisations is, in effect, a product of doing all of the above (and more).  Our community is well aware of the achievements so far, but also work left to do to draw impact more securely into the academic process.
  • We should also connect multiple networks and embrace impact consultants. This is probably meant conceptually, but I for one am choosing to assume this means physically *awaits hugging opportunities*

As ever, our Impact SIG community represents the experiences and expertise at the heart of impact management.  Perhaps the increased weighting of impact from 20 to 25% for REF 2021 will galvanise the sector into more swift action to address the points above. The challenge and opportunity now is to harness this collective knowledge and connect ourselves and our networks to make it happen.

And consultants, sorry for the upcoming volume of hugs.

Gold panning small
old gold miner

UHCW Research Summit

I was DELIGHTED to speak at this year’s UHCW annual summit, having enjoyed last year’s so much. There was such a fabulous buzz and appetite for good practice that it was impossible not to be enthused! A fabulous job done by all.

My slides – if you want them – are here. The rest of the blog posts on this site cover some of the points in more detail too, but please get in touch if you want to chat further.

*drops impact mic* 

Coming to the ARMA 2017 conference? Feeling impact’y? Welcome!

If you’re heading to the ARMA conference for the first time…..welcome!!

The ARMA conference is the headline act for a busy annual programme of activity. The conference has grown substantially in recent years and offers a real showcase for the excellent work happening in the research management community. It’s also a fantastic opportunity to meet peers, share best practice and connect into sector wide activities. 

If you’re not already aware, there are a number of special interest groups (or SIGs) within ARMA. Each of the SIGs offer a space to share learning, update knowledge, ask questions and generally find support in a particular topic area. Each group will also have a timetabled session at the conference. The list of the current SIGs can be found here, and to join, just logon to the ARMA website and follow the instructions from SIG page. But let’s turn to my favourite…..

The Impact SIG is a group of like-minded (or sometimes disruptively minded – you know who you are….) people interested in all things ‘impact’. The SIG is led my Lizzie Garcha and myself, and we represent the impact community within ARMA. We also sit on the training committee so we can connect impact community ‘need’ with formal training provision. Our Impact SIG session at conference will provide delegates with an opportunity to join (or reconnect with) the community, network with those in similar roles, and discuss current issues in research impact. Please do come along, all are welcome!)
If you’d like to chat beforehand about the conference, ensure you have a familiar face to connect with or generally want to make best use of the event, please get in touch. There’s talk of SIG leads being rather more visible at conference (probably with fancier badges rather than neon tshirts), but whether we’re in sparkly hats or hiding out like ninjas, we’re very happy to chat. The chances are (*history suggests*) I’ll be on twitter before, during and after the event and very happy to answer any poignant or stupid questions. Likelihood is I’ll be asking the latter myself. We’re also keen to know if there’s anything people would particularly like to discuss/cover in the session – please let us know via email or using the comments box below if there is. 

So if you’re feeling impact’y and conference’y, get in touch, get involved and get connected. See you there!