Read the latest HealthWatch newsletter:  Newsletter 115, Spring 2021

The 2020 Chair's report was delivered by Susan Bewley at HealthWatch's first virtual AGM, on Tuesday 20th October 2020

Last year I started with a reminder of the history of the charity that was rooted in the Campaign against Health Fraud. We consciously moved from being 'against' things, to being 'for' fair testing, and 'for' science and integrity in healthcare. We have always been particularly concerned about people being deceived about illusions of cures from those posing as healers when people are at their most vulnerable - when ill or depressed.

Just as you thought bias, dishonesty, corruption and fraud couldn't get worse the pandemic (or syndemic) hit. This year's events with Covid-19 and its aftershocks undoubtedly play into all our deepest fears, uncertainties and hope in science, and yet also into the hands of those who are fools at best, and greedy liars at worst. It has shown, more than ever, how hungry people are for trustworthy, reliable, scientific information. Yet more than ever, misleading information flows around the internet faster, further and deeper than truth.

So, how is HealthWatch doing, in terms of its activities and effectiveness, as we take the cool, calm long view? Although conceived two years earlier in 1989, we were born or formally constituted in 1991, so next year will be our 30th birthday.

Let's remind ourselves that HealthWatch, with its entire reliance on unpaid volunteer Trustees, has been foresightful, a kind of crucible or 'think tank', set up before all of the following and yet with many overlapping aims and personnel: the Cochrane Collaboration (started in 1993), Transparency International's global coalition against corruption (1993), NICE (1999), Sense about Science (2003), James Lind Initiative (2004), Harding Centre for Risk Literacy (2009), Friends of Science in Medicine (Australia, 2011), AllTrials (2015). These and so many others have changed the landscape since the 1980s. Did HW spawn all this? No, but we spotted and celebrated many of the individuals, and we've been part of the fabric or glue between initiatives and institutions. Sometimes we're the 'awkward squad' raising concerns about the culture of institutional 'pass the parcel' of responsibility.

The problems haven't gone. Our work remains as vital as ever, notwithstanding limited manpower and resources, so we have to be targeted if we are to continue to 'punch above our weight', and to offer something different – our 'unique selling point' or USP, which is more than simply a lack of financial indebtedness to corporations.

THE WORK

We've continued with the three areas of strategic focus, trying to be professional and proactive, but concentrating limited resources to where there is a special HW contribution.

1. Communications

Trustees: We are reliant and indebted to the Trustees who continue to give their volunteer service. Clearly it's been harder for those who do still have full-time jobs, let alone small children in a year dominated by the pandemic, lockdown and homeschooling on top of the usual pressures, but I particularly want to thank David Bender who is stepping down after many 'tours of duty' as a Trustee, Chair and Secretary. He's been a fabulous support, holding us all to come up with action points, while acting as a 'corporate memory'. I do hope we get a vaccine soon so he can enjoy many more years cruising.

Meetings: The committee has taken to Zoom like a duck to water, and met remotely four times this year. We've embedded the role of responding to consultations, and a new role of parliamentary liaison. Although we’ve looked and invited a couple of observers, we’ve not yet appointed a Trustee with a patient-user background, and we have retained and had useful input from our students. We've started a process of writing job roles and tighter governance, but not lost the informal and enjoyable familiarity of meetings.

Googlegroup: The googlegroup continues to be a great source of information and ideas without being too onerous, averaging just over one email a day, though often in bursts of discussion. Anyone who wants action can make suggestions to the committee, or better still offer to help – let's say drafting a letter that might then go in HealthWatch's name about your particular 'bee in the bonnet'.

Newsletters: We rely as our main benefit to members on the news items and our seasonal newsletters. Tremendous thanks to Mandy Payne for this. Articles are now to be published first online as the paper version starts to be gradually phased out. Highlights of articles this year have covered: unreported medical device trials; the Cumberlege Review; ethical concerns over student research activities; dental implants, the Caster Semenya case, and the pelvic mesh scandal. We've had book reviews of Sex Robots & Vegan Meat, Pharma's Funding Trap, and Why we need to talk about Alzheimer's. It would be very good if more members joined in the tasks of reading/reviewing books, and spotting new talent to write and work with us. Please could everyone commit to identifying and praising an up-and-coming young person, draw their work to Mandy's attention and invite them to join HealthWatch?

Twitter: we have increased our followers by another 200 to 1185 (if not our hardcore membership), and benefit from some of the conversations.

Website: in Alan Henness's capable hands this has been undergoing a refresh to modernise and make more attractive thanks to the feedback from committee observers and new trustees.

Change of name: It has become clear that we have been drowned by the government's Healthwatch England, that we can't easily be found on the internet, and have to face a change. It is my hope that in our 30th Birthday year, we change our name and up our game. I hope the membership agree with me, and with your committee, that it's time for a stocktake, revitalisation and revamp. We have been debating and voting on a long list but have come to a shortlist of: Campaign for Health Evidence, Society of Evidence-Based Medicine and no change. We will continue to take soundings, but will refine this for a constitutional agreement at the next AGM.

 

2019-20 AGM

2018-19 AGM

2017-18 AGM

Membership numbers (total)

232

212

231

 

Googlegroup members (total)

60

54

-

Twitter followers

1185

979

842

 

Cumulative HW Committee threads

2416

1845

460

Cumulative Tweets (~500/ year)

2648

2169

1630

2. Projects

Background briefing papers These can be found on the website (from the menu go to Publications > Background Briefings). I thank Roger Fisken and James May for their excellent new briefing paper on Statins.

Consultations Roger Fisken has continued with his work of anticipating relevant Public Consultations (largely with government bodies), eliciting comments from the membership and writing our formal responses. This year has included the Parliamentary Select Committee on Health & Social Care: delivering core NHS and care services during the pandemic and beyond; The Competition and Markets Authority consultation on advice to be given to private-sector IVF clinics on consumer law; and the Department of Health and Social Care consultation on extending the storage periods for embryos, eggs and sperm. He has also looked at the final reports to judge HealthWatch's impact and we'll be reviewing this role and a handover to another Trustee during the next year when he takes over as Secretary.

Research: In March the HealthWatch funded study by Till Bruckner led to publication of a report comparing Health Technology Assessment agencies in UK, France and Germany. Overall, this found that the UK’s NICE does a very good job, but we must keep an eye on transparency and redactions, and influence especially with new leadership. Although the study did find transparency gaps, it helped us to decide not go further in that direction, but to concentrate on devices.

Devices: In November 2019 HW wrote to Baroness Cumberlege to ask the Independent Medicines & Medical Devices Safety Review to demand that those who implant a device must know (and be able to explain to the patient): what it is and what its constituents are, how it is identified and tracked, how the evidence shows that it works, what risks are involved, and what to do if things go wrong. In March we published our five demands to keep patients safe from medical device harms, well in advance of the delayed Independent Medicines & Medical Devices Safety Review (Cumberlege report, 'First do no Harm'), that had been set up to examine historical harms to pregnant women from Primodos, the decades of valproate-damaged babies, and women with health complications resulting from vaginal mesh and breast implants. HealthWatch's submission led to my being invited, as HealthWatch chair, onto the Today Programme and to the report's launch press conference (sadly our contribution hit the cutting room floor on both occasions). We must make more links with patient organisations and keep the pressure on the government to enact its recommendations in full. The key problem is how to put patients before profits.

Breast screening: In April NHS breast cancer screening was paused. And the BMJ published my blog explaining why that’s a good thing. Then we noticed in August that the vast AgeX breast screening trial had been ended, ever so quietly. This is tremendously good news. HealthWatch requested that Jeremy Hunt (as Chair of the House of Commons Health Select Committee) ask his successor as Secretary of State to reveal what the Age X trial cost and who approved the spend. We received no answer and were fobbed off, but will continue to investigate, ask questions and ensure that the results are not buried, and examined independently as we cannot trust the team in charge.

Trading Standards/Charity Commission and the regulation of uncharitable charities: Our indefatigable committee member Les Rose, continues to collate fantastic information about the most egregious of some alternative medicine-promoting charities, and has been chasing six complaints that have languished in the Commission's pending trays for far too long. We've been working on strategy with the Good Thinking Society, and were pleased to be able to ask a difficult question about their criteria of 'public interest' at the Charity Commission's recent rather 'stage-managed' AGM thanks to HealthWatch member David Colquhoun's place becoming available. We are not achieving much rapidly, but continue on doggedly.

Puberty blockers for gender dysphoria: Questions about the quality of evidence, particularly for puberty blockers in gender dysphoric children and young people, continue and the Chair has written to Hilary Cass and NHSE about the processes of the two Independent Reviews (initially just about drugs, now extending to the services). Our previous HealthWatch award winner Deborah Cohen continues to do features on this for the BBC.

Students: An enormous amount of work goes into running the annual Student Prize and I thank everyone for their continuing contributions to setting and marking this. We have had more input from students on the committee than before and know from them that teaching and training on critical analysis and evidence-based healthcare remains improvable. I hope that we will identify tasks and work for them that are fulfilling, maybe within a separate workstream or subcommittee.

Annual Award: As usual we had a plethora of good candidates to choose between, and we look forward to hearing from our latest Annual Award winner, Jennifer Rogers.

3. External outreach and Partnerships

Centre for Evidence-Based Medicine, Oxford: HealthWatch volunteer Mandy Payne has been helping communicate best evidence about COVID-19 by working with Oxford CEBM to produce lay summaries of the Oxford COVID-19 Evidence Service reviews on important questions about the science of the pandemic.

Royal College of Surgeons: Since our Vice-Chair, Keith Isaacson, and I met with Derek Alderson (the previous president of the RCS) regarding their attitude to devices, we have noted a much better, more fulsome response from the RCS. We are delighted that they have taken up funding our annual Student Prize, and maybe more educational links or joint activity will follow (especially on teaching and training in appraising evidence at student and early academic career level).

French advocates for good science: HealthWatch has been at the forefront of raising concerns about breast screening programmes. We joined a cross-European challenge to an EU-funded clinical trial to publicly share concerns about inevitable and avoidable harms to women from MyPeBS, a flawed randomised controlled trial of breast screening. Through this, HealthWatch has formed links with three other groups who share concerns about women's health and human rights in research: Belgium's Group de Recherche et d'Action pour la Sante (GRAS), the Italian epidemiologists and scientists of NoGrazie, and the French group Cancer Rose.

European Manifesto against Pseudoscience Launched yesterday, the day before the AGM, HealthWatch is an official organising supporter as well as having many individual members sign the manifesto.

Access Info Europe In 2019, along with 27 other consumer and health related agencies, we signed a letter asking for better transparency from the European Medicines Agency. Although of course, this is moot once we leave the EU next year, because the EMA will not be under any obligation to respond to requests that come from outside the EU. Nevertheless it resulted in more conversations about transparency within the EU that we will still want to support.

THE FUTURE

This is something we hope that Healthwatch can do more of in the future – working with other like-minded organisations to 'get more bang for the bucks', whether supporting one another's initiatives or even getting grants for funded projects, as we've seen the value of using our Research Fund to generate ideas and evidence. Our president, Nick Ross is very well connected, and our applicant for Vice-Chair is also a keen 'networker' so again, next year, we hope to capitalize further on these links.

Susan Bewley, Chair of HealthWatch

20 October 2020