Patients, Promises & Politics: Who Can You Trust?
To whom do we entrust our health decisions?
It is Election Day in the UK and for patients – current and future – we remain in a health-purgatory which started when the political party manifestos were launched six weeks ago and will undoubtedly persevere. The battle for power will continue as a predicted ‘hung parliament’ will necessitate alliances to be rapidly formed between parties previously at loggerheads. The requisite number of seats in the House of the British Parliament is unlikely to be filled by enough of any one party for a clear ruling constitution to be formed.
To whom do we entrust our health decisions?
What will this mean for the health of a nation and for our individual well-being? Regardless of the country where you live or the health system to which you accede, when leadership changes – governments, medical organisations, even your own family doctor – how do you evaluate the pledges made to secure your belief and how can we measure both the effectiveness and delivery of the services described? As patients, we regularly have to trust others – often strangers we have never met and who know little about our everyday lives - to make decisions about our health for us. Who gets our healthcare vote?
In the Reith Lectures of 2002, Baroness Onora O’Neill discussed the issues of transparency that a society needs to have to enable trust in its leaders. That includes politicians, other leaders such as physicians, and the industries who manufacture the products and services we use daily. As previous Chair of the Nuffield Foundation, the Council on Bioethics and the Human Genetics Advisory Committee and widely published on justice, philosophy and ethics, Baroness O’Neill asked, "how can we tell which claims and counterclaims, reports and supposed facts are trustworthy when so much information swirls around us? How do we decide who to trust when we search for inform about the wider world?
Information technologies are ideal for spreading reliable information, but they dislocate us from our ordinary ways of judging one another's claims and deciding where to place our trust. We may reasonably worry not only about the written word, but also about broadcast speech, film and television. These technologies are designed for one-way communication with minimal interaction. Those who control and use them may or may not be trustworthy. How are we to check what they tell us?”
Social media has changed who and what we trust about medicine
Fast forward to 2015 and as patients now living in a multichannel, multi-directional world underpinned by a panoply choice of medical tools, trackers and technologies – we have more access and transparency than at any other time in history to medical information. Yet ironically, with the onslaught of information comes a wake of misinformation – deliberate and accidental.
This can drive even the most stoic of us to distraction. Even the best-intentioned health campaigns by charitable organizations can leave us overwhelmed when social media amplifies a health message and we dilute clinical knowledge with patient anxiety. The number of people seeking a pin-prick test for diabetes pushed local health resources to the max for example, when Diabetes UK promulgated their ‘4Ts of Type1 diabetes’ program – Toilet, Thirsty, Tired and Thinner. Although these are clinically accurate symptoms of TD1 – they are also the hallmarks of any and every rambunctious 8-year-old child going through a growth spurt. And parents will panic. Misinterpretation means misinformation.
Real world data – the ‘hung parliament’ alliance of patients, physicians, pharma
Although patients are experts about their experiences, they are not medical experts. Accordingly, we still rely on physicians, politicians and the pharmaceutical industry to walk through this minefield of medicine with us. Experience-based medicine of patients seeks to achieve equality to evidence-based medicine to which physicians will sedulously and appropriately ascribe and by which the efficacy of medicines will still be measured. We need to increase and change trust. Together. And we still need to check what we are told and by whom.
Healthcare needs a ‘hung parliament’ where every interest is represented by the parties – collaborating for better outcomes, not competing.
In 2015, we rely increasingly on peer-to-peer review as our preferred source of trust. Social media is described as a channel where followers are ‘earned’ – from the Forrester model of ‘POEM’ – Paid, Owned and Earned Media. Physicians and patients alike use social media communities as trust barometers – social media site, SERMO for example brings >1.2 million doctors together to ‘talk real world medicine’ and sites such as ‘Patients Like Me’ are the equivalent for people living with illness. The popularity of these channels is attributable to that leitmotif of trust – transparency – information is sought, expedited and validated by people who aren’t chasing a vote but are sharing their experiences. Alliances between patients and physicians to generate ‘clinically clean’ real world data is the catalyst on this road to transparency and trust. Healthcare needs a ‘hung parliament’ where every interest is represented by the parties – collaborating for better outcomes, not competing.
When trust collapses; entrepreneurism solves
Finally, what happens when a disillusioned public loses trust in a government? Can the pledges of the parties be delivered in The Real World outside the hyperbole of the ballot box? For example, the UK today is deciding who to trust on the following miasma of healthcare pledges (party intentionally not stated):
- Recruit and train an extra 5,000 GPs by 2020.
- Seven-day access to GPs 8am to 8pm by 2020.
- A named GP for every NHS patient.
- Guarantee that private patients cannot be prioritized over NHS patients.
- Appointment to see their GP within 48 hours, same-day for those who need it.
- Open GP surgeries at least one evening per week, where there is demand for it.
- Introduction of a statutory “licence to manage” for NHS managers, overseen by a professional regulator.
- NHS managers failed cannot be hired again in the NHS.
- Cut senior management numbers by 25%, give flexible access to healthcare and reduce waiting.
- Train and recruit 1,000 extra doctors and more nurses.
- More recruitments from within EU to fill vacancies.
- Increase real terms NHS funding at least £8bn a year by 2020, starting with an extra £1bn a year until 2018.
- Integrate health and social care budgets.
- Extra £3bn a year to NHS frontline services paid for by leaving the EU, savings on health tourism and cutting middle management.
- Keep the NHS free at the point of use for all UK residents.
- Compulsory NHS-approved private medical insurance for all visitors to the UK and migrants resident for fewer than five years.
- Publicly-funded NHS free at the point of use - abolish prescription charges, re-introduce free eye tests and NHS dental treatment for all, and ensure NHS chiropody is widely available.
- Oppose NHS privatization and inclusion in US-EU free trade agreement.
Therapy area focus:
- Provide “whole person care”: directly connect physical, mental and social care into a single service.
- Guarantee the right to psychological therapies to give mental health the same priority as physical health.
- £500m a year extra for mental health, including £250m over 5 years for pregnant women and new mums, £1.25bn over 5 years for children and £50m for a research fund in mental health.
- Extra £1bn a year for social care.
- Provide the right to an assisted death.
- Ensure that all cost-effective treatments are available to all patients who need them – including complementary medicines that are cost-effective and have been shown to work.
- Make mental health a greater priority.
- A complete ban on the promotion of tobacco and alcohol products, including sponsorship, plus increase of taxes on both alcohol and tobacco.
- One-stop cancer diagnosis - for shorter cancer waiting times.
- Integrate health and social care.
- New Medicines and Treatments Fund to help treatments not usually available on NHS.
These are polarizing pledges that range from the absurd to the attainable. For patients in the purgatory in between election manifestos, voting day and victory; whoever wins, loses or aligns, however long that period of uncertainty is ... you will remain a patient and you will require care.
In 1979 and in 1924, minority governments in the UK were defeated and dissolved by a ‘motion of no confidence’ when it was felt that a parliament or an issue was untenable. Anticipating that most of these government promises will fester, unfulfilled by the politicians - patients and physicians are redirecting their trust into more realistic endeavors. Let’s dissect the top 3 assertions here; access to GPs. Self-created GP organizations have already been created by entrepreneurs. These firmly place the patient as consumer, proactive in their use of medical resources.
One such example is ‘Babylon Health’ founded by Ali Parsa. Babylon Health is a paid-for, subscription-based, online GP service. People can ‘buy’ Babylon Health services which include free text information directly to and from a GP, fast phone or video consultations 24/7 and using the trackers in the service as a repository for personal health and to track emerging problems. It is one of the world’s first integrated digital healthcare services.
By combining the latest technology with the knowledge and experience of the best doctors to make healthcare simpler, better, and more accessible and affordable for people everywhere, Babylon Health is the future ‘Governing Model’ for patient-centric healthcare. If it were a political party it would get my vote. Let’s see how healthcare dissolves …
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