My recent study visit to the USA was an opportunity to forge some new connections and to continue conversations begun with colleagues at international meetings and conferences in previous years.
It was a fascinating time to be in the United States Capital city, or ‘the District’ as the locals sometimes call it, not least because my stay coincided with the temporary shutdown of the federal government.
This stormy time precipitated lots of conversation about ‘Politics with a capital P’ as well as American policy and health care research – the subjects I was there to learn more about.
At the centre of my trip was an expert panel convened to update standards for patient-centered outcomes research. I was invited to provide input as a qualitative research methodologist by PCORI (Patient-Centered Outcomes Research Institute). Their Methodology Committee, appointed by the Comptroller General of the United States, works to define standards that provide minimal requirements for the conduct of scientifically valid research. To that end they have developed a set of standards, covering such things as processes for handling missing data, to the conduct of systematic reviews, and Bayesian trial designs.
The panel itself was a thought-provoking experience. Our group of distinguished inter-disciplinary experts in methodology debated the essential ingredients of the new standards for mixed methods research designs and I found myself sitting next to some of the ‘big names’ in methodological research, swapping details of our current publishing plans. I also learned more about the work of PCORI which is an independent non-profit, non-governmental organization authorised as part of the Affordable Care Act legislation in 2010. PCORI funds research designed to “help patients and those who care for them make better-informed decisions about the healthcare choices they face every day”. This wording – with patient choice at the heart – made me reflect on the NIHR CLAHRC remit, part of which is to “translate research findings into improved outcomes for patients, guided by those who will use that information”. This sparked some lively discussions with colleagues about the subtle linguistic differences in policy, and how these might link to larger programmes of theory and politics.
While in DC I was also able to take up a Visiting Scholar invitation at Academy Health, conveniently located in the Central Business District of the City. Here I had opportunities to present ongoing research, and to talk about CLAHRC and the wider organisation of the NHS. I was also asked to reflect on my career in Health Services Research and to provide tips for early career researchers – so I drew on some of the learning we’ve done with our brilliant Wessex trainees.
Academy Health is another remarkable organisation. It is the lead organization in the USA bringing together for health services researchers, policymakers, health care practitioners and stakeholders. Not unlike HSRUK here in the UK, Academy Health seeks to inform health policy and practice, and translate evidence into action. I spent time with Margo Edmunds, Vice President, Evidence Generation and Translation, and was particularly interested to learn how she combines her knowledge mobilisation role with a portfolio for Diversity, Inclusion, and Minority Engagement. I am keen to see how CLAHRC can take some of these things forward in relation to our own workforce and that of the wider health system (see Margo’s piece in health affairs here)
Dr Gregory Downing was another of my ‘put the face to the famous name’ contacts at Academy Health. Greg is, I guess, what we would call a clinical academic. He is an expert in critical care, the Founder of Innovation Horizons a consulting practice directed to innovation and technology adaptation in health care and a previous Founding Executive Director for Innovation in the Immediate Office of the Secretary at the United States Department of Health and Human Services (HHS) and Scholar in residence at Academy Health. Greg is a core member of the team putting together this year’s Health Datapalouza
My final stop before returning to the UK was the campus of the National Institutes of Health in Bethesda, Maryland, ten miles outside the City. This Campus is home to among other things ‘Americas Research Hospital’ and the Warren Grant Magnuson Clinical Center (a mere 14-story, 2.5-million-square-feet building made from seven million bricks) where world leading clinical research and patient care takes place.
The enormous campus is also home to the National Library of Medicine (NLM) the world’s largest biomedical library. I confess I don’t think I had ever really thought about where PubMed and MEDLINE came from but now I know! I have seen the building. As well as maintaining vast print and electronic information resources the NLM also supports and conducts research, development, and training in biomedical informatics and health information technology. While at the NIH Campus I met with colleagues at the National Information Center on Health Services Research and Health Care and learned more about their work. Of particular interest was their HSRProj a growing database of research projects in progress. We compared notes about infrastructure and support for research and talked about possible links between UK and US health services research and informatics. Before I left I was able to give a final presentation to HSR staff at NLM and, at their request, I focussed on our research projects about emergency and urgent care and this led to yet more conversations about ongoing research in CLAHRC Wessex and the importance of mixed method and qualitative research.
Lest you think that CLAHRC Deputy Directors are not allowed time off I will add that while in DC I fitted in a trip to the movies – to see The Post the dramatization of events surrounding the publication the Pentagon Papers in 1971 and how the first female newspaper publisher handled the battle between the press and the government. A fascinating film and uncannily prescient given the current debates about news media.