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Every bad experience is an opportunity for change. And it’s usually a driving factor to do things differently, or make sure they get done differently. With illness, it’s a bit like that: you don’t want your condition to persist, and you hope others don’t go through the same. We’re all humans – clinicians and patients are not alien to each other; it’s guaranteed that at some point in clinicians’ lives they too have experienced some sort of ill-health. Our humanity connects us, but unfortunately other factors sometimes compromise that connection. It shouldn’t be happening between patient and clinician: the clinician provides the treatment but it’s the patients’ health in the balance, so the clinician shouldn’t have the power advantage. We shouldn’t resent “going to the doctor”, there should be a multidisciplinary team on hand to deal with our every need, including those qualified to deal with our most personal issues. There are clinicians that are willing to learn from their patients’ experiences, and take a vital step towards patient-partnership.

The Tuke Institute has researched patient-participation to evaluate the ways in which patients could be more involved in decision-making regarding the treatments and services they receive and how this affects health-outcomes. One problem that appears to crop up again and again is the lack of collaboration in the current models of services. One way to deal with it is to act on what emerges from the patient-voice and establish a health-service design to reach the best possible health-outcomes for patients.

The Radboud Centre are taking a similar approach; embracing the patient and their family as part of the team of health workers. They also believe in empowering the patient first and foremost by enabling patients’ participation. One of their most recent research projects, led by Lise Verhoef, called “Social media to obtain insight into quality of care” did just this. It assessed the quality of health services from the patient’s perspective by looking to social media and rating sites, where patients opened up about their experiences. The Tuke Institute similarly looked into rating sites for health-services, and came up with a design for a scientifically validated Trip Advisor for health-services. The Radboud concluded too that this new source of information, social media, should be used if we are to take a patient-centred approach. They added that it should be used to complement traditional methods.

The King’s Fund take an even more patient-specific approach than this, one that “sees the person in the patient”. This approach is one that looks at the problems patients face and the factors that shape their health-service experience. Ultimately it should enable health service staff to relate to patients and deliver the quality of services they would want for themselves or their families. The project was launched under their ‘Point of Care’ programme which really does push us to think about what the point of our public health-service is. It isn’t just to be rid of an illness or affliction, it’s to stay well too. The Tuke Institute believes in getting well and staying well, and that is only possible if the services are sufficiently effective.

If we are going to move towards patient-centred health-services, patients should have their voices heard in order to share their insight on how services should be designed. After all, patients know their lives with their condition far better than clinicians do, and they know sooner and better what works and does not work. However, patients’ insight can only be shared by patients if there exists a partnership with clinicians. Patients should be empowered to challenge the flaws in the framework, to help treatment become personal. This would help make a health-effective, sustainable health service a reality; one that is equipped to deal with every single need of its patients. Health-services need to make decisions based on their patients’ needs, not the services’, as achieving the most health-effective outcomes should be their number one priority.

Now has come the time for me to say goodbye, as this is my last blog as an intern. Over the past year I have done lots of reading on patient empowerment, the patient voice, and patient participation. Realising just how important it is for patients to play a part in the design of health-services really inspired me to write these blogs. There is nothing more fundamental than patient-participation in improving health-services. As someone who aspires to do some work in medical journalism, and by now I know the field pretty well, I can’t stress enough just how under-represented the patient voice is. When patients are the ones who know their condition, know what works for it and what doesn’t, know that they may require mental and social health services as well as physical health services, why are physicians making all the decisions as to how they are treated? This is why problems happen, again and again. Without patients, health-services will not improve. Writing these blogs has been a motivating experience, thank you for reading!

There is no doubt that the majority of people are confused about the NHS’s “care.data” project. One only has to look to poll results on www.YouGov.co.uk to see that a staggering 67% of the public who voted did not receive the ‘Better information means better care’ pamphlet the NHS supposedly distributed last year. The title of the pamphlet is disinformative to say the least, and ironically so: better information does indeed mean better care, but the NHS certainly did not live up to “better information” when they failed to inform the public correctly.

We can see now that the government has breached the basic principle of informed consent, as set out by the Declaration of Helsinki, a research ethics document every clinician should be familiar with. The Declaration states clearly that the duty of a clinician is to protect the “life, health, privacy and dignity of the human subject” and that all subjects in any research program, therapeutic and nontherapeutic, must be volunteers. Consent is absolutely essential in therapeutic and nontherapeutic research. Information regarding the Declaration of Helsinki is laid out in The Oxford Textbook of Clinical Research Ethics (2008: 141-148) by Prof. Richard Ashcroft, who is an Advisor to the Tuke Institute on medical ethics. It appears that the care.data project, managed by the Department of Health, has ignored the Declaration of Helsinki’s basic principles of ethics. This is despite the fact that those basic principles of ethics and transparency were actually built into the framework and emphasised every step of the way, by the designer of the framework for protecting patients’ benefit in the project, the Tuke Institute’s very own Chairman, Dr. Rupert Whitaker.

Clearly, there is a massive communication loss between patients and the NHS on this project. Whilst having an enormous medical database presents promising research opportunities, it poses the risk of patients’ data being left for the likes of insurance companies to get their hands on. Patients’ privacy is protected only by pseudonyms, which does not guarantee that data can’t be traced back to individuals; predictive analytics makes it very easy to do this and anyone can buy the statistical software for it. Names, addresses and national insurance numbers are omitted from the database, but family history, vaccinations, diagnoses, mental health data, lab results are not. This data could be retrieved by those with malicious or commercial intent – who knows, but we do know that the NHS and Health and Social Care Information Centre (HSCIC) have acted too rashly.

On Monday 24th February, the HSCIC admitted giving the insurance industry the coded hospital records of millions of patients. This sparked calls for a substantial publicity campaign, to include national TV and radio. The question is, will this include patients themselves? Patients absolutely deserve the right to know about this, and all of us need to have the benefits, drawbacks and details communicated to us. Nothing and nobody should be left out. People deserve to know how the project works. The NHS and HSCIC acted without full consent — that’s what it comes down to; they used people’s data without the majority of the public knowing — I certainly did not know, and more importantly, I didn’t know I could opt out. I feel let down, and I’m sure I’m not alone in that. The trust of patients has been lost, and I am one of them.

Thankfully, the project has been put on hold for six months. This is down to the British Medical Association and the Information Commissioner’s Office, who accused health service officials of failing to properly communicate the public’s right to opt out of the £50m scheme. While data has already been sold, it’s not too late to regain the public’s trust and inform them of exactly what is going on. It’s true; the benefits are wide-ranging, but they too need to be carefully explained to the public, and then each individual person should enact their right to opt-out or opt-in. Communication is vital, and so is transparency when it concerns the patient’s protection. But this communication and transparency should be between patient and NHS, not a profit-making company.

Health-services should empower patients and hear our voices. We seem to have no control in this, apart from the poorly-communicated declaration that we can opt-out of the project. Where’s the patient control in this? We are not active participants in this project, as active participants of any given project are treated equally and communicated with as one of the team. I’ve visited my physician several times already this year, without once being told about care.data. Just how hard is it to hand over a leaflet? Or print on every prescription a notice about our right to opt-out? The NHS acted so quickly to sell our data, but not to tell us about it. Why? The public should not have been left in the dark about this, and there is no valid or technical reason why we have been. The Tuke Institute is already working on the issues that arise from the lack of patient participation, and there are already models for systemic participation in health-service delivery and governance. The solutions exist, the Department of Health just needs to listen and change its ways.

However, it’s great to see how many people are standing up for the rights of patients on this issue – it is absolutely fundamental that the patient voice and patients’ benefit come first and foremost. This is why the next six months should focus on informing the public as much as possible. It’s a pity that it is now supposedly going to happen after our data was sold. Ultimately, the answer to the question of what happens when you damage your patients’ trust is clear: you must work hard to regain it and show that you honestly do “care” about our data.

References:

Ashcroft R (2008) The Declaration of Helsinki pp. 141-148 in Emanuel E, Grady C, Crouch RA, Lie RK, Miller FG, Wendler D: The Oxford Textbook of Clinical Research Ethics. Oxford University Press.

Whitaker R (2010) “A framework for public participation in a national system of medical research: Using public participation to protect the public’s interest”. Presentation on “The use of patient data: Exploring public participation in research” on behalf of the National Institute of Health Research’s Research Capability Programme, Department of Health, UK, at the PatientPartner NorthWestern European Regional Workshop, 12.11.09, Central Hall, Westminster, UK

Whitaker (2010) “Participative Medical Governance in the Delivery of Health-Effective Medical Services” http://www.tukeinstitute.org/publications/consultation-documents/1004-cd1

Thirty whole years have passed since the discovery of HIV. A serious infection that, left untreated, becomes fatal. During those 30 years, as the epidemic took more and more lives, clinical research worked desperately to counter it. Yet to this day we are still losing people to it, and those whose lives are prolonged by biological interventions are still suffering under the state of health-services which are, in many cases, health-damaging rather than health-promoting. Why? Because if we are to take HIV seriously, then every action taken towards countering it must address the individual as a whole person.

We know that HIV doesn’t just affect physical health, it damages behavioural and mental health too. But sadly, all we ever hear about are biological successes in countering the epidemic, not behavioural or psychological treatment interventions. Clinical experts should be equally available to treat the behavioural and psychological health of a patient. Because in fact, what the eye cannot see is far more challenging because we are dealing with a subjective experience, not just the objective marks of the disease – so a physician, for example, would not be sufficient enough to intervene. We have to rely on the level of insight a physician has, in order for them to refer the patient to an expert in behavioural or psychological health. In no circumstance should the patient ever be given a pill on its own because illness isn’t just about the body. Also, in contrast to medication, mental treatments can never be reduced to a pill. Yes, a pill may alter some wires here and there, but really – like I said before – we’re dealing here with people and people are complex.

Put simply, a medication not does address an individual’s behaviour or the motivations for it. So, while antiretroviral therapy (ART) may have transformed what was once a death sentence into a manageable disease and reduced HIV transmission worldwide, it hasn’t stopped it; the pandemic is still expanding. And no, a ‘cure’ is not the immediate answer! See, there’s a trend here: just like a pill isn’t the immediate answer, neither is a cure.

We know ART prolongs life in most cases, but it is simply not cost-effective to keep using it and viewing it as the only solution. The costs are increasing for many organisations and public health systems and HIV is just one exemplar of this situation. Logically, the focus should shift from ‘cure’ to prevention and to making the most of what we have already. Because when used, behavioural and social interventions save a lot of money for public health systems, and they help prevent HIV transmission too. Alternatives to relying solely on medications for HIV are desperately needed in order to benefit patients at manageable costs. An integrated model of services that centres around the whole patient really is the most logical solution, as it will produce the best possible health-outcomes. Ultimately, it’s where we will save costs.

Prevention should also definitely become a priority. When I first read about the International AIDS Society (IAS) conference that was held back in July, I just couldn’t believe how much of the focus was put upon ‘finding a cure’. As if it’s going to happen any time soon, as if pharmaceutical companies aren’t still trying to tackle the complexity of the infection.

But, surely, preventing the infection reduces the need to eradicate it – so why isn’t prevention a priority? Not enough is being done to prevent the infection spreading in the first place, and a significant part of a needed solution is already clear – biopsychosocial medicine, or the integration of biological, psychological and social health-services for people with known risks for HIV. Clinical services provided specifically for behavioural and social health should overlap with public health services.

It seems like ‘prevention’ just doesn’t live up to the glamour of ‘cure’ which is so very popular in the public’s imagination. And why should it? It’s not going to interest anyone who wants to make a quick profit, is it? Well, the question that springs to my mind is: what about the patients? A far-off cure is much less pretty to those who already have the advanced stages of the infection, and have suffered enough. No, I’m sure they would appreciate better quality health-services that address their every need in order that they get better, feel better, and stay better.

Every clinician possesses an ethical duty to help patients acquire the skills and personal resources they need to practice health-promoting behaviour. If they don’t have those skills themselves, by being a psychologist for example, it’s their ethical duty to ensure that a psychologist is available. If they don’t offer their help in this way, how are patients to acquire the knowledge and skills to head for health? This is the reason integrated services are necessary; a physician is there to offer medication, but without collaborating with psychological and behavioural experts to treat those aspects of health, they aren’t empowering patients to change particular behaviours where they are most clearly needed. For instance, the prevention-targeted groups of men who have sex with men (MSM) and young adults.

Now, while it is essentially the patient’s responsibility first and foremost, we can’t criticise people for not having the inner resources to engage in health-promoting behaviours unless they have been provided the best circumstances in which to acquire them – like simply being referred to a behavioural specialist. So it’s fair to say that it’s the clinician’s ethical responsibility first.

And then there’s the darker, manipulative side to ‘finding a cure’: PR. It is becoming increasingly misleading and does a great disservice to the patients themselves. The ‘Cancer Ends With Me’ campaign, for instance, really does a disservice to people with cancer, who have the right to know how far off the cure is and what is and isn’t in their power to make that happen. It is an example of a campaign that is purely for the media’s gain and doesn’t achieve the goal of ending cancer anyway. While research is necessary now, profiteering PR is not.

Besides, the ‘cure’ being spoken of only targets a small proportion of individuals. It will be a long time before a cure for all can be spoken of. A vast amount of money is being spent on clinical trials worldwide on this quest for the Holy Grail of a cure. I think we need to be more realistic, because finding a cure will take many more years. It’s too soon to be investing so much time and effort into promoting it, especially as most of it goes on misleading PR which is detrimental and unhelpful to patients themselves. Health services should be altered to centre around the individual patient, and experts should be looking for long-term solutions such as the integrated model which targets behavioural and social health as well as physical health. We’re still left with third-rate health-services, even if a cure is found.
The search for a rapid ‘solution’ isn’t improving health-services at all, which really should be the priority. Now more than ever is the time for patient-centred standards of health-services, especially for chronic conditions such as HIV. The HIV epidemic should ideally set an example for any future epidemics in terms of how to deal with it. Currently, it’s setting a very bad example. It’s a shame, because we already know how to do it better – it’s just a matter of convincing those higher up to take a logical solution on board.

 

A message to future health-activists on World AIDS Day 2013. [This is a mirrored article which was originally published in December 2013]

The recently launched film “How to Survive A Plague” shows us some of the story of HIV-activism in the USA in the 80s and 90s, through the lens of ACT-UP and the Treatment Action Group (TAG). It’s a remarkable and unprecedented story of guts, anguish, and loss. I’ve lectured at a few universities on the history of failures and successes in the response to HIV, providing my own perspective to the pandemic that started with setting up Europe’s first HIV-charity, the Terrence Higgins Trust, followed by my going on to become a clinician-scientist specialising in HIV myself, and eventually founding the Tuke Institute. Thirty-two years with HIV myself gives me some perspective to speak from.

The original, American groups of ACT-UP sought to create responsiveness in the US government to address the pandemic; among other things, they realised that treatment was necessary and that there was none. We had never had a lethal, human, retroviral disease before and we had absolutely nothing in terms of biotechnologies to address it. Today we do, and the path from there to here was paved by groups like ACT-UP and TAG. It showed what committed — and desperate — members of the public can do to create change through participative science and policy-making, especially when most decision-makers just don’t want to know.

I saw the film in a dark basement bar in mid-November, at a meeting organised by Dan Glass and friends at The Glass is Half Full. The guest of honour was Peter Staley, a central figure in this history and in the film itself, who discussed the film and helped create a discussion around what health-activism in HIV might look like in the future. What or who should be targeted for activist intervention and why? It’s clear that activist intervention is necessary today, when we have these miraculous biotechnologies and yet they’re not delivering on the promise — there a miracle that failed to save the life of treatment-activist Spencer Cox, for example, because pills-only health-services aren’t anywhere near adequate. We know this, but it seems that most clinicians and scientists don’t and neither do the pharmaceutical companies that provide the biotechnologies. Sounds familiar? So, can there be another wave of activism and, if so, what should the newer generations of activists be aware of?

In the screening-room, there were a number of people, including myself, who had been activists “a while ago”. Grey hair was fairly common among us — at least in those of us who have any hair. We still want to make change, but our approaches are different now. It was interesting to think what we were all doing now: scientist, journalist, community-services’ manager, historian, film-maker. Happily, we still respect street-activism for what it forces attention towards; without it, complacency would have free rein as it did in the earliest days. Activism is what gets a self-satisfied ass to move on, and there are far too many such asses around, particularly in health-services and non-profits that used to be community-based. But for us grey-hairs, activism has mellowed to something else. We’re not extremists, radicals, or zealots by any means. In fact, in our eyes, we never were. But we were certainly protestors and we still protest, if today we advocate through different means. What a few of the wider group of us have forgotten, in our quest for comfort, acceptance, and career, is that street-activism is still — and always will be — essential to help us focus on our goals for progress. It’s also helpful for us to remember that advocacy is not limited to progressive activists. For example, it would be equally reasonable to see much of what the British Medical Association promotes in terms of physician-centred health-services as ‘activist’ — that is, radical (conservatism), militant (elitism), and zealous (self-service) since the physician-centred model it proposes was outdated in 1970. To agitate for it now certainly meets the criteria for ‘activism’, albeit a radically regressivist one.

Sitting through the film, I was reminded bittersweetly of times and places I’d not have remembered otherwise. I went to some ACT-UP meetings when in New York, took part in demonstrations, and always admired (and was rather afraid of) ACT-UP’s brassiness. It spoke up with courage. The film also showed footage from the March on Washington, which I attended, and from International AIDS Conferences in Montreal and San Francisco, where I presented the first public health research on the futility of the HIV-immigration and travel-bans — and its lack of ethics. That led later to a tense Jim Lehrer Newshour segment with myself as an HIV-positive immigrant, the regressivist Senator Dannemeyer, a redneck physician from Arkansas (what on earth does a clinician know about public health?), and the supportive US Assistant Secretary for Health, Philip Lee. It’s worth remembering that the only reason it was even on national prime-time TV was because of the efforts of groups like ACT-UP insisting on awareness of the issues. From these and other experiences, it’s clear that more experienced advocates need to share their knowledge and skills with newer generations, not just around HIV and not just within one country, but around health-activism generally and internationally. Russia’s and Ukraine’s current problems around both HIV and equal rights are an HIV-redux, even as their soaring epidemics are driven largely by injective drug-use.

In that spirit, I have some words of possible advice to newer advocates and activists; perhaps some of them might be useful.

Firstly, be clear about: what your goals are and why; what the most efficient ways are to achieve them; what the key methods of leverage are to create systemic change; what the key points of political leverage are (which nerves are live and which are dead); what the needs and weaknesses of your targets are (is it brand-profile, self-image, or share-holders?) and how you can speak to their issues while aiming to focus their attention on yours; which are the most efficient and effective ways to create attention and pressure; which alliances you think you need most and why; who you can rely on, those who will never become allies, and who are those somewhere in-between; which issues are superficial or short-term issues (albeit important ones) and which are deeper, structural issues that need to change; how the current, very stable system will adapt to neutralise the change you wish to bring, and how you can best prevent that; and how you will translate short-term change into long-term change. That last is one we’ve never been good at.

In the fray, be aware and protect your biggest assets, which are integrity, transparency, authenticity, courage, cohesion, creativity, an acting on social values, ethical independence, a willingness to learn, and a lack of shame — which is quite different from a lack of introspection or insight, both of which are essential. Without protecting these assets, you become useless and pointless, if not destructive.

Be strategic about how to create your impact: avoid scattershot actions and also have a clear approach to stepped escalation. There’s little point in putting unnecessary pressure on targets if it’s possible to create change and alliances with less effort and conflict; it also helps sustain future co-operation. The other part of the balance required here is not to be co-opted by the dominant perspective simply because you’ve been allowed ‘inside’ and feel comfortable now. Your independence and autonomy are key to progress and to your integrity. A careful balance is possible.

Be clear on your methods, have multiple and varied methods, and make them work with others’ methods in order to punch above your weight. Don’t get stale and don’t allow targets to become numb to your interventions. The most effective tool of the street-activist is political embarrassment, which creates motivation for decision-makers to do something differently. But it can’t be through empty stunts; you also have to make your case evidentially — and the more strongly you can do that, the greater your effectiveness. This was one of the keys to the success of TAG in tandem with ACT-UP.

Join up with socially-aware scholars and academics because, today, things are so much more complex than they were 30 years ago. You need more sophisticated knowledge, methods, and skills. A few scholars and academics want to be engaged in creating change. You need to find those who do and who can translate their specialist knowledge into well-communicated and expert messages, delivered with the impact of street-activism where necessary. You need to make your case with impact, not just make an impact. Part of that means that you also have to demonstrate solutions, often provided through translating social, behavioural, and biological science into applied policy, supported by the motivation that street-activism provides to complacent decision-makers. This is where TAG showed its strengths: it led the way towards new types of clinical trials, community-based and ‘guerilla’ trials, and new biotechnologies that have helped to prevent millions of people from dying. Finding solutions needs the knowledge-base of scholars and the creativity of activists together.

Be clear about what you do when you are successful, even in little ways. The immense success in eventually getting effective medications to patients seemed to have stunned treatment-activist groups. They have had an essential and crucial focus that became unmoored from the larger picture of health-services; success left most treatment-activists without a goal and they then made poor new priorities in line with their self-image rather than in line with the next level of needs of the people they had been trying to help. A very human failing that we can learn from and avoid in the future. We should debate such questions as “Is advocacy for a cure for AIDS more important than advocacy for ensuring health-services help people get well and stay well in a way that can translate to other chronic conditions? Which would have far greater impact on patients and on society?”. It’s probably obvious that I think the advocacy for an AIDS-cure, although glitzy and sexy, has missed the point.

So, don’t lose sight of how your issue relates to a larger picture. This will help in developing alliances, in creating cogent arguments that are more generally applicable, and will also help in devising solutions. This is a key problem of HIV-activism to date, which has failed to see that pharmaceuticals are neither a solution to problems of clinical illness (other than preventing someone from dying) or to wider social, mental, and behavioural determinants of transmission, illness, and recovery. This is a crucial focus of activism in the future and it joins up well with the movement towards re-designing national health-services, especially for chronic conditions. HIV-activists have something to give and to benefit from through creating such alliances, as argued in a related piece.

Finally, I have to laugh when I say: be careful about accepting input from older activists and advocates. While we can share our longer experience, a usually wider perspective, sometimes greater clarity, and some essential knowledge and skills, there are a number of pitfalls when working with us. We don’t have the ‘oomph’ that younger advocates have (and we don’t like to admit it); we can also show outdated and ossified political ideologies, reduced relevance to the situation of younger people (and yet increased relevance to the situation of older people!), a smugness or patronising complacency, and a reduced ability to learn. In short, we’re older. We can be both a lesson and a warning, and we don’t like to think of the latter. While we do have a place and a role in framing future goals and road-maps, the real progress will now be driven by you. Do it well.

I hope that helps.

We’ve heard about how to address the issue of the patient voice (here), and about the benefits of asserting it with openness and transparency, so this is a good time to take a look at what is being done about it already.

 

The Tuke Institute is one of many organisations working hard to promote the importance of, and need for, patient-centred health-services. With an intensive project underway to produce a set of new ‘Gold Standards’ for HIV-services, among other projects, it’s fair to say that the Tuke Institute’s model is deeper than most. Here at the Tuke, we recognise that what’s currently being done to improve services isn’t enough, and without a collective, continuous effort, starting from the very bottom, barely anything will change. Simon Stevens is coming from the USA to take over the Chief Executive’s for the NHS, our current public health-service system, and he’ll hopefully bring with him some more constructive American values that can fight the complacency that swamps these issues. It will take a motivated and experienced leader, excellent organisation, and a willing team to make it progress.

 

The Picker Institute has been a leader in promoting patient-centered services, defining seven primary principles for patient-centeredness, including the need for respecting patients’ values and preferences, emotional support and the involvement of family and friends. They embody the shared conviction that patients’ views and experiences are integral to efforts to improve health-services. This is crucial but not enough.

 

Other think-tanks such as the King’s Fund focus around the importance of clinician-patient partnerships and believe that the patient should be seen as an active participant in their treatment. It’s also crucial, but not enough. Then there are organisations such as Patients Like Me who are key advocators of values like openness and transparency, believing the patients views and needs always matter and come first. Crucially, it links up patient-communities with scientific research to create tools that can help make a difference to the creation of health-effective services and medical technologies. Tools are what will make the change, informed by concepts around patient-centredness, and driving re-design in the delivery of health-services. The Tuke Institute has recently partnered with Patients Like Me to research the development of a comprehensive and patient-centred assessment of health-status, which can be used for identifying individuals’ health-needs, empowering patients’ voices, measuring services’ effectiveness, and reviewing where things need to change in services.
The NHS has recently proposed a Trip-Advisor type platform where patients can review the effectiveness of their health services and speak out about what needs to be changed, what could be done differently, and what is necessary and unnecessary. It’s a shadow of the one proposed by the Tuke Institute, but it’s a first step.

 

All these efforts into improving patients’ lives centre around the patient and not the service-provider. This is important in order to create a relationship between patients and their health-service providers that benefits the patient first. Promoting the patient-voice and putting a patient-centred model into practice are intended to move towards a common goal: to achieve better health-outcomes. Empowering patients’ voices is essential to provide leverage for organisational-level change.

 

Each individual patient is the only one who knows what their life is like and how illness affects them. The Patient Voice is essential to delivering health-services that are relevant and address their health-needs, not just their disease-needs. For organisational-level change, patients need to bring their voices together to make systemic change in the quality and effectiveness of our services. A good example of this is the UK Community Advisory Board which is an HIV-organisation providing a network for community HIV treatment advocates across the UK.

 

Each organisation mentioned above is part of the collective effort in addressing the need for patient-centred services. What’s missing in most are an overall, evidence-based framework for creating change, and the tools to make that change possible, starting from the patient up.

 

The tools to prioritise the patient voice are gradually being developed through the Tuke’s work. Among several projects, we are developing tools to review the health-effectiveness of services according to each individual person’s needs and experience, not just a sanitised, “Trip Advisor”-type review that is unlikely to be meaningful or effective — not least because the British libel laws need to change. We’re also creating a radically new template for clinical practice-standards in our demonstration ‘Gold Standards’ project, which focuses on patient-centred service and health-creation, not disease-reduction, for people with HIV. Using just these two tools, patients will be able to say what they need that’s relevant to their own lives, and also voice their reasonable expectations about what a so-called “health”-service should deliver.
Change has to occur at every level of health-services but the NHS has tried top-down approaches and they don’t work: there are too many vested interests in the way of meeting patients’ needs. So, here at the Tuke Institute, we’re starting at the bottom instead of the top, with the patients’ experience and voice, translating those into change by developing tools to make that voice heard in co-designing and co-delivering effective health-services. Ours is a unique approach led by personal experience with chronic conditions and empowered by the knowledge of our scientists and advisors. Starting at the bottom, bringing the patient’s voice every step of the way, is the only way to create real organisational change.

Imagine a world where becoming ill led to you being locked inside a hospital room in complete darkness, strapped to a bed used more times than you’d like to know, alongside patients with all sorts of diseases and only one foul-mouthed nurse to help you all. And every time you scream, or call for help, no words come out. You are silenced and helpless, isolated and consumed by your illness.

 

It sounds like a nightmare scenario, but its close to how some patients feel about their health-services: helpless, dealing with the same situation many others are in, offered no alternatives, often having only one person to ask for help and feeling completely alone.

 

If the people who felt like this found a way to ask for better, would they be given better? Hopefully, and if they asked for help as much as possible they’d be given the answers to everything they wanted to know – so they’d feel as much in the light about their condition as the experts are.

 

The patient voice is fundamental in changing health-services for the better, and it has been recognised and promoted by the Tuke Institute, the Francis Inquiry and other government inquiries, patient organisations such as PatientsLikeMe and the Picker Institute, among many others.

 

Patients should be able to participate in their services fully, not just in their treatment. Their voices should be asserted in order to be heard clearly, and they should be confident enough to raise delicate issues. Participation means complaining when services aren’t good enough, actively changing behaviour and ultimately working out what works for you and what doesn’t. It achieves a more efficient and effective recovery, enforces prevention on primary and secondary levels, and creates a better health-outcome.

 

Participating and asserting the patient voice, and incorporating the values of openness and transparency, are key to online communities (PatientsLikeMe, myHIV, HealthTap, Inspire, etc.) which help greatly to reduce feelings of isolation and loneliness. Patients realise they’re not alone, and that their experiences are more common than they imagined.

 

The coming together of the patient voice means empowerment, personalised services which are more effective and address the whole person, co-ownership of the process and shared responsibility for outcomes, confidence and trust in health-services, and a higher self-confidence to change things in the self and others.
It ultimately creates a vision for the future, one seen in the works of The Tuke Institute which, as a whole, considers the whole patient and every aspect of their journey. It is clear that there is a fundamental need for health-service reform, and that all patient needs should be addressed for a better overall health-outcome.

As someone keen to rise in the field of medical journalism, I am constantly scanning news stories for the latest in medicine, health, science and technology. However, too often I come across bizarre headlines and over time I have learnt to pick the reliable ones from the unreliable ones. What struck me is that there seems to be two types of journalist: one with good intentions, and one that is clearly out to manipulate stories to meet their own ends. Both aim to engage the public but the ways in which some journalists do cannot be justified. Surely the qualified journalists and scientists who represent the world of science are required to do so correctly, and truthfully? While scientists are motivated to represent their results in the best possible light, they also face the increasing pressure put upon them to achieve the best outcomes, so that some are prone to exaggerate, cut information and jump guns in order to portray what their funders and the public want.

 

While good-willed journalists wait patiently for reports to be released from the labs and for the embargoes to lift, there are those who are simply trained to exaggerate their stories in order to make profit and impress the higher-ups, without a care for the people who hang on to their every word of promise and assertion. They take full advantage of the lenient laws regarding content in the media, and once out there it’s difficult to retract any story that does cause damage. Faith is raised in those who grasp upon any sign of hope, faith in the only people that have the power to show it to them, and once the deception is realised, seeing that the real breakthroughs are yet to come – the trust is lost and the emotional damage is done.

 

There’s nothing wrong with an attractive title, but headlines such as ‘Finally! A Cure for HIV!’, ‘HIV Cure For All’ or ‘Doctor Discovers Miracle Cure’ all sway from the truth because they twist the results of the latest scientific study to a story more appealing, and more profit-making. Most of the headlines in the media are harmless to an extent, but these particular types of headlines are diminishing for struggling patients that look to any form of hope for the future and improvement to their health. So why on earth is the media still getting away with it? Especially as they’re reporting from the mouths of the people that terminally ill patients are trusting with their lives.

 

I recently read Dr Steve Taylor’s blogs on http://www.huffingtonpost.co.uk/dr-steve-taylor/ which include the noteworthy entries ‘How HIV Stigma Kills’ and ‘Stigma, Complacency and Ignorance in the Fight Against HIV’. They provide insight into the prejudice that still exists, and the dangerous attitudes of those who aren’t afraid of catching HIV because the treatments are available. Headlines that suggest a cure that’s “free for all” only serve to consolidate this complacency.

 

In his latest blog, titled ‘A Cure for HIV: Really?’ Taylor comments on the International AIDS Society Conference held in Malaysia early July. A scientific study was presented at the conference, involving three HIV positive patients from Boston. Although one patient died during the study, the other two had their blood tested following treatment for cancer where they’d ceased to take their HIV-treatment medicine, and no infection was found.  Despite appearances, the study is not ‘progress’ for HIV-related treatment. It is indeed a step towards an HIV-cure but not at all relevant for those already coping with the infection.


Thinking back to the Mississippi baby case (http://www.bbc.co.uk/news/world-us-canada-21651225), media reports were rife at the time with claims that this case would change the HIV treatment paradigm and prevent further infection in babies. The study’s author, Dr Deborah Persaud claimed it would “transform our current treatment practices in newborns worldwide”. The fundamental mistake made is the fact that it inflated the hopes of individuals. Physicians were suddenly on demand for a cure that doesn’t yet exist, and hopeful patients were sent away disheartened, and confused. Taylor, who commented on this issue in a blog entry, asks the question of whether the case details were prematurely released into the media. I strongly support the fact that they were, because the primary concern should always be about the patients’ needs, and not about existing practices.

Examining the latest developments in HIV-related research, leading international HIV/AIDS experts attended the 7th International AIDS Society (IAS) Conference on HIV Pathogenesis, Treatment and Prevention in Kuala Lumpur, Malaysia in July. They explored how scientific advances can inform the global response to HIV/AIDS and opened the conference with the World Health Organization (WHO)’s 50 new recommendations on biomedical approaches to HIV infection, including recommendations on HIV testing, using antiretroviral medications for prevention, linking individuals to HIV care and treatment services, initiating and maintaining antiretroviral therapy (ART) and monitoring treatment. While their recommendations suggested progress towards more effective prevention and treatment generally, they did not focus on any specific population. This is a problem because, while they’re making technology generally applicable, they’re not looking at the needs of specific populations and working from there to identify the particular solutions needed. Although the solutions include biotechnologies, biotechnologies are not a general answer because solutions lie in the particular not the general. This is echoed in the calls for personalised medicine and even (in molecular biotechnology) personalised medications.

 

Medicine works by creating solutions that work for a specific individual, as opposed to public health which works as a “one size fits all” solution for populations. Physicians and biotech often confuse the two, putting the cart before the horse by making biotech lead health-services. Biotech should be there to support health-services, not the other way round. Biotech products can never be the solution for everyone because they do not address individual people and contexts. This is a problem that needs to be addressed because while the vested interests of commercialism look to impose their perspectives on health-services, their raison-d’être is to make money first, without a view to helping individuals in the long-run.

 

This biotech-based approach is what drives the specification of treatment-standards without reference to the necessary service-standards. We know how to treat an HIV infection, but we clearly don’t know how to treat a person with HIV. That’s why the transmission-rates continue to rise as do the illnesses that come alongside HIV, including Hepatitis C, depression, and so on.

 

Because of this, we are doing a project into the standards of services, led by researcher Luke Sleiter from New York. The project’s aim is to show how services can be more effective by providing standards for the treatment of the patient, not just the infection. The data show that treating the infection is not enough – as with Hepatitis C, where up to a quarter of people who are cleared of the infection become reinfected in some clinics, because basic mental, social and behavioural issues have not been addressed.

 

I am working closely with Luke as communications intern to launch a ‘Patient Voice’ campaign whereby the patient feels empowered and participates in their treatment program by voicing their individual needs. This also relates to the ‘Rights and Responsibilities’ research at the Tuke which is building upon a new framework that enables rights and responsibilities equally. This is key to the effectiveness of health services provided.

 

The WHO conveyed to the IAS conference that their guidelines include expanding the use of ART medications from treatment of the infection to prevention of the infection. However, they lacked any guidance as to how and if at all to treat the behavioural, social and mental health of people with HIV, and given that HIV is a pandemic driven by behaviour, this is short-sighted.

 

At the recent ‘HIV at 30’ conference at Cumberland Lodge, Chairman of the Tuke Institute Dr Rupert Whitaker mentioned the necessity for comprehensive and integrated services. This again refers to individual needs and social, mental, behavioural as well as physical health-services which are essential for helping a person get well in the sense of the WHO definition of health which states: ‘Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.’

 

Rupert Whitaker commented on the subject recently, asking this vital question: “As patients, we have been assured by physicians that medication is all we need in response to serious sexual infections, such as HIV. However, pills are clearly not enough to solve the problems of infectious epidemics, we should routinely include behavioural medicine in health-services, because HIV is about behaviours like sex and drug-use” While pills fix the infection short-term, the patient might not have actively changed behaviour, and this can often be unnoticed for long periods of time while it is assumed by the physician that the patient is recovering and is acting in his health’s best interests. It isn’t until it is specifically requested, or offered upon observation, that the need for behavioural medicine and real change comes into the equation. This is fundamentally wrong; because there is the possibility that a large extent of patients who suffer with mental, social and behavioural issues alongside their physical illness go unnoticed, and therefore unhelped.

 

The rise of pills and biotechnologies as the sole answer to human needs and infections is dehumanising and, while the intentions of these are mostly good, they’re only part of the solution to better health because they don’t incorporate the human element and treatment that so many people require. By ‘human element’ I mean the involvement of mental, social and behavioural treatment that keeps a person healthy all-round, and not just physically.

 

by Luke Sleiter

It was easy for me to complain to my mom and brother when they picked me up outside the clinic about all the things I disliked about my experience at the clinic. But the real challenge comes when I try to imagine what I would have actually wanted to happen during my medical consultation to make me feel healthier and more satisfied.

So I’ve devoted a lot of thought to what I would imagine a productive and health-affirming visit to look like. And I must admit that I’ve hit a wall.  I’m so accustomed to feeling dissatisfied and powerless in my interactions with physicians that I haven’t really given much thought to how I would stage and direct a clinic visit. My imagination simply stops there. I don’t know if it’s a symptom of cynicism or pessimism or lack of creative visualization, but I can’t for the life of me figure out what I would like to get out of an interaction with a physician that would actually leave me feeling better. I keep writing different scripts in my head and can’t seem to land on the right one.  Here are some ideas that arose out of my most recent experience:

At first I thought it may have been nice to have been asked what I would have liked to have gotten out of my visit.  Well, that would have left me stumbling over my words and unsure of what the physician was really asking me.  I would have wondered if I was being tricked into suddenly being responsible for something I wasn’t able to deliver as a panic-stricken patient. This scenario becomes a health-related consumeristic conundrum–the desire to be treated as a passive customer, while at the same time wanting to feel empowered to express what I need in order to feel better.  Perhaps a more collaborative approach by the physician would have changed this.

Then I thought about what it would have been like if the physician had flat-out asked me what he could have done to ensure that I left the clinic feeling healthier and happier.  I would have needed more time to put together a list–and that list would have included things that reach far beyond the scope of what any physician would be capable of doing for me. Could a physician make me feel more financially secure, or find me a rewarding job when I graduate, or calm my fears about long-term adverse effects of my medications?  I seriously doubt it.  Feelings of health and happiness extend far beyond a visit to a clinic.  This brings up all sorts of confusion about how well I know what is best for me and what the physician might know that is best for me.  I don’t know where to draw those power-knowledge lines.  I guess it’s a lose-lose for the physician.

So I imagined whether I would have liked the physician to have snapped on those purple latex gloves, touched the bug bites, and closely examined my skin.  I mean, it’s certainly not the most comfortable thing to have a stranger’s hands on my body, searching for answers through poking and prodding. There’s an acute awareness of the existing power differential when I’m passively standing naked in front of someone who’s fully clothed and examining my body.  It makes perfect sense that this sort of vulnerable experience doesn’t exactly get people running to their next medical appointment.  But at the same time, I was upset that he didn’t touch me or really look closely at the bites. I thought that was what physicians were trained and paid to do.  Even after the awkward partial strip-tease I went through to show him the bites, I left indignant that he didn’t do a more thorough exam.  I was conflicted.

I then wondered if I would have felt better had the doctor asked me a list of questions pertaining to my presenting symptoms rather than me feeding him a long list of questions I’d typed up on my smartphone. Leading our discussion should have felt empowering to me, but instead it left me feeling like I was doing all the work and wasn’t being met with an equal level of effort. On the one hand, I was glad I could share my own medical theories. But on the other hand, I felt that he wasn’t actually hearing what I was saying. Even if the he was hearing the actual words coming from my mouth, he wasn’t concerned about the emotions behind them.  I was at Urgent Care, after all, so I was obviously feeling a sense of urgency, if not outright panic. But he didn’t once acknowledge that my long list of possible causes for the rash or my eagerness to jump in and offer solutions to the problem could have been symptomatic of my anxiety and need to leave the clinic with a better collaborative understanding of my condition and concerns. Maybe some basic empathy or sensitivity could have turned things around a bit.

My final wish was to have left the clinic with a prescription in hand in case I needed to fill it later. After all, it may have been comforting to leave the clinic holding something in my hand–proof that someone had taken the time to write something down or given me a backup plan. But, then again, I may have interpreted the act of writing a prescription as a typically dismissive pharmaceutical response to an unanswered question. How dare he just pull out a prescription pad and hand something off to me to pacify me!  Yet another example of a no-win situation for the physician.  There were obviously other needs that weren’t being met in order for me to feel so conflicted about not having a prescription I wasn’t even sure I needed.

And so the confusing script continues. It’s pretty obvious that a lot of soul-searching is required to fully understand the complexities of just one visit to an urgent care physician. Maybe that’s where the problem lies–that imagining a healing and satisfying visit to a clinic is far beyond the scope of my experience.

That’s precisely where I need to start when thinking about new standards for medical visits–in a creative and imaginative place.

by Luke Sleiter

As I was about to leave for the Urgent Care clinic in a suburb of Minneapolis with what could have been anything from hundreds of harmless non-itching bug bites to a potentially fatal rash from the mood stabilizers I’ve been taking for years, I was explaining to my brother why I hate “going to the doctor”:

I don’t like giving my personal information to someone sitting across a check-in counter with other patients and clinic workers within earshot.

I don’t like being asked to recount my entire medical history.

I don’t like explaining all the medications I take and justifying why I need to be prescribed controlled substances to help with anxiety and depression.

I don’t like stripping down to my underwear in order for the physician to ask me the same questions the nurse just asked me.

I don’t like trying to make the physician feel like she/he is doing a good job when I’m the one doing all the work.

I don’t like receiving even less information than I got from an internet search for my symptoms.

And I don’t like leaving the clinic feeling like nothing has been accomplished

 

Not only were all of these concerns confirmed; but I also left the clinic with some new reasons for why I dislike such visits.

The physician asked me very few questions. He awkwardly told me I could show him my bites “however [I] felt most comfortable” (so I ended up feeling like I was doing a medical office strip tease). I fed him an exhaustive list of reasons I thought I might have this condition and he hemmed and hawed over why he didn’t think it was related to (a) a recent increase in one of my medications, (b) recently starting an entirely new medication, (c) swimming in lake water, (d) spending an hour in a hot tub, (e) a recent cold sore after fifteen years without a herpes simplex outbreak, (f) recent aches and flu-like symptoms, (g) a trip to Brazil a few months earlier, or (h) bed bugs.

Without putting on gloves or getting near me, the young physician suggested I may have hundreds of harmless bug bites of some sort and that I should take pictures of them to watch for changes. If any changes occurred, I was to come back to Urgent Care and start the whole process over again with a different physician.

I left the clinic with no new information, no recommendations for home remedies, and no prescription in case things got worse.  Instead, I walked away with that familiar sense of discouragement, outrage, powerlessness and frustration.

That is why I hate “going to the doctor.”

 

How would I have liked my visit to go?  Check for “Why I Hate ‘Going to the Doctor’ – Part II.”