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I seem to be visiting more CLAHRCs (Collaboration for Leadership in Applied Health Research and Care) next week than in all my time as a boy looking for new school shoes. One of the CLAHRCs unfortunate enough to be visited by me is Northwest London.
They’ve just launched a brilliant new tool to help patients keep track of medicine changes and improve communication with health professionals and others. ‘My Medication Passport’ is available in hard copy and can also be downloaded as an app on your smartphone. The initiative is an idea that came out of the CLAHRC’s public involvement group and is already being used by 5000 patients across Imperial College Healthcare NHS Trust.
The ‘My Medication Passport’ web pages are bursting with good information to accompany the launch including patient testimonials and a video. Really, really good and just the sort of thing that has been emanating from CLAHRCs. Here’s hoping this blog can help a little in putting it in the hands of more patients for whom medication changes are a real care and safety issue.
Since we are talking about innovation the Guardian did one of its online discussion today, this time on the role of the Academic Health Science Networks (AHSNs). Panelists included Jonathan Sheffield from the National Institute for Health Research Clinical Research Networks (NIHR CRNs). The discussion can be found here although those nice people at the Guardian normally do a summary too at some point.
I am not sure what made me think about and look for this report: ‘N=1: Why people matter in medicines.’
Perhaps it was all the talk last week about the Department of Health’s 11th report to parliament on the Pharmaceutical Price Regulation Scheme (PPRS) - in essence the way in which drug prices are set – and the steps being taken to introduce a new system called ‘value-based pricing.’ Or the paper also published last week suggesting that the design of clinical trials is often inherently flawed and ultimately unhelpful to clinicians because studies look to answer the wrong question. That is, rather than looking at the benefits of one treatment compared to another, they compare the treatment against placebo. Or the fact that the Royal College of Physicians will be much in the news today for other reasons.
It certainly wasn’t this post on ‘Scrubbing Up’ on the BBC site and which I only heard about today. Although the article made me feel very angry indeed, after taking a step back I realised that it only served to prove my point in this blog that we are not thinking through the issues around medicines development and use. As follows.
‘N=1: Why people matter in medicines’ is the report of the sub-group of the Royal College of Physicians Medicines Forum. This working party was brought together to look at the medicines pipelines from a patient perspective.
Chaired by Harry Cayton, its members included patients, regulators, health professionals, academics. We took evidence from people such as Ben Goldacre, Fiona Fox from the Science Media Centre, Boots the chemist, charities and others. We also went out in the field visiting a GP surgery and a hospital pharmacy.
The report was completed last June and press released in September but it is quite hard to find on the College’s website unless you are looking for it. Nor did it get much coverage anywhere else as far as I can tell. So, I thought I would post its recommendations here for good measure (see below).
The overall conclusion will not be a surprising one for many people: that the way in which medicines are developed and prescribed could be more effective and efficient if designed around the needs of patients. That it is not, can be pointed to as a key reason for the current inefficiencies in prescribing practice; why many patients do not keep to their medicines regime Reform of the system has to be approached in a radically different way that focuses on making the system work holistically from a patient point of view as opposed to being preoccupied with making ‘disobedient’ patients more compliant. Instead of ‘concordance,’ think coherence.
And the report did propose some radical new approaches: every GP practice should have access to a local pharmacy adviser to whom patients could be referred for help and support; the better use of IT for prescribing; development of a patient formulary for the public to help them find better information about medicines and their impact; and the need to listen more closely to the way in which patients talk about their experiences of medicines and find ways of translating this into clinical practice so that patients and doctors are speaking the same language.
This might not be the right day for this blog, but there is no time like the present as they say.
Before I go, a quick mention of the fact that Harry Cayton will be chairing the new Public Engagement and Involvement Committee at the MHRA which should be up and running some time this year. Good news.
Recommendations for more effective engagement
The pharmaceutical industry, medicines regulators, commissioners and prescribers need to capture and appreciate what patients say about medicines more thoroughly and comprehensively, and to understand the stories that people tell about medicines: how they use them; the benefits they experience; and the adverse reactions that can arise, so that we can make the most of this area of healthcare.
Start the process with a collection of patient terms and descriptors, collected throughout the medicines system: in clinical trials; regulatory decisions; technical appraisals; the consulting room; the pharmacy, in order to help health professionals work with patients to get the most from a medicine they have decided to take.
Create new opportunities to capture and react to patients’ views and experiences about medicines. The current opportunity to report suspected adverse drug reactions through the Yellow Card Scheme needs greater use and a higher profile. We need to explore other options to report – for example developing a patient formulary and using initiatives like healthtalkonline.
The Expert Patients Programme should explore how it could further develop expert medicine users to provide support and advice to people about their medicines.
To build further on existing achievements, more sustained effort needs to go into the quality and design of medicine information leaflets, addressing a range of needs, and using a range of formats and approaches – including exploiting opportunities offered by new communication tools.
Recommendations for service improvement
GP consortia in collaboration with local networks of pharmacists, nurses and other healthcare professionals should introduce a proactive system of aftercare to allow patients to be contacted in the first few weeks after starting a new medicine. Some people may need longer-term support. We welcome the planned introduction of the Department of Health’s ‘new medicines service’ which may be an opportunity to improve the management of medicines use.
Every GP practice in the country should have access to a local pharmacist adviser, to whom they can refer patients with medication problems, and who can be used as a source of advice for both patients and GPs on medication related issues.
Patients should control access to their care record and, if they wish, allow pharmacists and other healthcare professionals to access and input into their electronic NHS patient record.
There should be a better use of information technology in general practices to assist the public in requesting and obtaining prescriptions.
Recommendations for improving research for the benefit of the public
Reporting guidelines on patient and public involvement in medicines research should be developed to: improve standards of reporting of patient and public involvement (PPI); strengthen the evidence base for PPI in medicines research; and encourage its inclusion in research design and conduct. These guidelines should be primarily aimed at scientists writing up their research for publication or involved in peer review, and at academic journals.
Health departments across the UK should collaborate and fund initiatives to improve public awareness and understanding of the importance and role of research in delivering quality care. We would like to see public involvement in health research extended to include their involvement in the development of new medicines.
The new National Institute for Health Research (NIHR) School for Public Health Research and NIHR Policy Research Unit on Behaviour and Health to be established as part of the government’s white paper proposals on public health should investigate public health-orientated approaches to the use of medicines, alongside conventional applications of pharmaceutical technologies.
Regulatory approaches should also support consideration of the population benefits of medicines use. The outcomes of regulatory decisions should be evaluated in terms of population health benefit, together with an evaluation of the acceptability of such an approach to the public.