Ethical and economic issues in the appraisal of medicines for ultra-rare conditions

The Office of Health Economics’ (OHE) informs decision making about health care and pharmaceutical issues at the UK, regional and international levels.

In light of concerns that not all medicines for ultra-rare (also known as ultra-orphan) conditions are appraised under the same NICE process, a new OHE Consulting Report discusses the distinct ethical and economic challenges faced by medicines for ultra-rare conditions, with particular reference to the challenges of HTA in the UKA failure to consistently consider all ultra-rare disease medicines under the HST process could lead to inequalities in access and health outcomes for patients with ultra-rare conditions (Source: OHE)
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Ethical and economic issues in the appraisal of medicines for ultra-rare conditions


The economic influence of the NHS at the local level

The King’s Fund | January 2020| The economic influence of the NHS at the local level

A new long read from the King’s Fund has been written to help people working in the NHS understand the level of economic influence their organisations can have and the benefits this can bring to local populations, in a way they may not have considered before (Source: The King’s Fund).

The long read available from The King’s Fund The economic influence of the NHS at the local level

Mindfulness interventions for rheumatoid arthritis: A systematic review and meta-analysis

Full reference: Zhou, B. |2020| Mindfulness interventions for rheumatoid arthritis: A systematic review and meta-analysis| Complementary Therapies in Clinical Practice, 101088|


A new systematic review and meta-analysis into rheumatoid arthritis finds that mindfulness interventions, as a complementary therapies in clinical practice, can significantly improve pain intensity, depression, and symptoms in patients with rheumatoid arthritis.

Other highlights of the study’s findings include:


  • Adverse effects accompanying the use of mindfulness interventions were not pinpointed in all the studies.
  • The authors suggest that we need to make full use of the Internet to link the mindfulness interventions line (in hospital) and online (outside the hospital), such as developing mindfulness meditation App, orienting courses and online psychological counseling.iphone-410311_640





To explore the effect of mindfulness interventions in improving outcomes for patients with rheumatoid arthritis.



Following the collective strategy of Cochrane Collaborative Group, the Cochrane Library, PubMed, EMBASE, Chinese Biomedical Literature Database, China National Knowledge Infrastructure, and Wanfang Database were searched from the establishment of databases to September 2019. Reference lists were searched for additional studies. Risk of bias was assessed using Revman 5.3. Disagreement was resolved by discussion.



A total of 6 RCTs were included, including 337 patients. The results showed that the improvement of pain intensity in mindfulness group after intervention was better than that in the control group, and the difference was significant. There were significant differences in depression between the two groups. The results showed that there were significant differences in DSA28 between the two groups. The results showed that there were no significant differences in anxiety and CPR between the two groups.



mindfulness interventions can significantly improve pain intensity, depression, and symptoms in patients with rheumatoid arthritis compared with conventional therapy. But the result still needs to be confirmed by more high-quality, large-sample randomized controlled trials.

The Library can provide the full article to Rotherham NHS Staff, request here 

HIV in the UK

New report shows that HIV transmission in the UK has continued to fall | Public Health England

This report provides an overview of the HIV epidemic in the UK up until the end of 2018. The report shows that thanks to increases in HIV testing, fewer people remain unaware of their HIV status.

The drop in HIV transmission has been especially large among gay, bisexual and other men who have sex with men from an estimated 2,800 transmissions in 2012 to 800 in 2018, a 71.4% fall. The number of gay, bisexual and men who have sex with men living undiagnosed with HIV has halved since 2014 from an estimated 7,000 to 3,600 in 2018.

The scale-up of combination prevention (which includes the use of condoms, HIV testing in a wide range of settings, starting antiretroviral therapy (ART) as soon as possible if positive, and the availability of Pre-exposure Prophylaxis (PrEP) for those who are negative) across the UK is working.

This report also focuses on five strategies that are key to future HIV control and prevention:

  • HIV testing policies
  • Clinical Care and Treatment as Prevention (TasP)
  • Notification of partners of persons newly diagnosed with HIV (Partner Notification)
  • Pre-exposure prophylaxis (PrEP)
  • HIV prevention services for people who inject drugs.

Full report: HIV in the UK: towards zero HIV transmissions by 2030

Additional link: PHE press release

Pregnancy research review

This study examines the evidence base on UK pregnancy research needs and priorities and how it compares to the current funding landscape. The report indicates the NHS spends significantly less on pregnancy-related research compared with other health conditions.

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Funding for pregnancy research totalled £255 million from 2013 to 2017, or about £51 million a year. As pregnancy care costs the NHS £5.8 billion annually, this means that for every £1 spent on pregnancy care, less than 1 penny is spent on research.

The study found that this investment is much lower than for conditions such as heart disease – 7p for every £1 spent on care – and cancer – 12p for every £1.


The report, commissioned by the UK Clinical Research Collaboration, shows that the £255 million spent on pregnancy research accounts for about 2.4 per cent of all direct, non-industry health research.

Key Findings

  • £51m per year is invested in pregnancy research in the UK.
  • For every £1 spent on pregnancy care in the NHS, around 1p is spent on research.
  • Mental health research is the top priority for all stakeholders and is likely underfunded.
  • Other priority topics are varied, spanning stillbirth, preterm birth, inequalities, postnatal support, and safety of medications during pregnancy. The level of funding currently provided differs across the topics identified as priorities.

Full document:  Pregnancy research review | The RAND Corporation

Additional link: RAND press release

Primary Care Networks

PCNs (primary care networks) could make a positive difference if given resources, time and practical support – but workload has proven unmanageable for a significant proportion, a British Medical Association (BMA) survey has revealed

This report sets out the findings of a survey of clinical directors about their experience of being involved in the creation of PCNs, the recruitment of a new workforce, the delivery of new services and also their views on the future of PCNs.

The report found that 63 per cent of respondents said they were confident in providing strategic and clinical leadership to their network.

However, almost half, 49 per cent, of clinical directors classed their workload as unmanageable. And almost two thirds, 63 per cent, said the same about the workload of practices in their network.

The survey also revealed a majority of clinical directors, 57 per cent, feel confident in developing relationships and working collaboratively with local medical committees but 53 per cent described their relationships with local integrated care systems or sustainability and transformation partnerships as ‘poor’.

Full document: Exploring the early challenges facing Primary Care Networks. Survey of PCN Clinical Directors | BMA

See also: Workload undermines PCNs, finds survey

NHS funding bill enters Parliament

The NHS Long Term Plan Funding Bill will enshrine in law an extra £33.9 billion a year by 2024 for the NHS | via Department of Health and Social Care


The Secretary of State for Health and Social Care will introduce the NHS Long Term Plan Funding Bill to Parliament. The bill will enshrine in law an extra £33.9 billion every year by 2024 for the NHS to transform care. It will not seek to limit the NHS in deciding how funding is spent and where – a decision that is made by local clinicians for their local populations.

The bill provides safeguards that mean the Treasury will be required to ensure the annual supply estimates for the department’s NHS budget cannot be reduced, creating a legal exception that protects frontline NHS funding for the first time.

This comes on top of recent pledges:

  • to build 40 new hospitals up and down the country, backed by £2.8 billion
  • an extra £1.8 billion for capital spending, including £850 million for 20 hospital upgrades and urgent infrastructure projects
  • £450 million for new scanners and the latest in AI technology

Full story at Department of Health and Social Care