Reframing patient empowerment

It's good to talk - and following a chat with friend and colleague Bill Russell. I've been thinking about why it is "patient empowerment" doesn't seem to work in practice.

Firstly, it is an irony (check here for a definition and more info on what irony is). There is a dissonance between its implied meaning and what it literally means. Just thinking of the term assumes that someone other than the patient has power - and by creating a program or concept called "patient empowerment" comes across as them with the power trying to give them without the power, some of their power - ultimately the ones with the power are still power-full.  Hence the irony.

Secondly, who thought you in healthcare had the power anyway?  As a patient I am the only person who has power of my health  I may need help from health professionals, the gym instructor, my mother, advice from the bookclub ladies, thoughts from the parish priest etc.  The issue is that I may be seeking a way that health providers do not take away the power I have when I access them.

Thirdly, maybe thinking it is all about power is the problem.  Power itself has no use unless it is applied, employed, or used. This process is called influencing. Some people, with little obvious power can get a lot done through effective influencing - and vice versa. So I wonder what would be different if we thought about the relationship/s and the influencing flows between patients and healthcare providers?

Please add a comment if you have any reframing propositions for "patient empowerment"

Research: How engaged are patients in their healthcare

The Heatth Foundation has released an excellent report on their research into patient engagement. It's one of the most up to date and significant reports I'e seen on this topic for a long time. It makes for some uncomfortable reading, especially regarding patients who have long term conditions.  There is a summary report, but I commend the full version for required reading for all NHS Commissioners and those working on improvemet projects.

Book Review: Overtreated by Shannon Brownlee

The subtiutle of this book is "Why too much medicine is making us sicker and poorer". This book was quite shocking. I know there is a lot of what goes on in healthcare that is unnecessary yet to find a huge amount of detail and information in one place really put the issue into perspective. It is focused mainly on the USA though there are many parallels with other health systems.

Throughout the book, the author provides stories and examples to illustrate the data and statistics that without the stories would appear cold and less shocking.

As I read through the book, particularly in the early chapters I found myself going "I know him/her"! Shannon Brownlee hooks a fair amount of the debate onto the actions of some of the current health leaders in the USA (you might like to read the book to see if you are mentioned...!) There is an excellent chapter on the VA Healthcare systems, how it has improved and in many cases how it is an example of how healthcare in the USA could look and feel.

Chapters include:

• Too much medicine: complelling arguments as to why population based healthcare would be a real improvement
• The most dangerous place: beware the hospital and what might happen
• Your local hospital: how uncoordinated care and overtreatment results in poor outcomes
• Broken hearts: how the latest fad takes root, based on economics
• The desperate cure: an argument for evidence based care if there ever was one
• The limits of seeing: an expose on the limits to radiology tests
• The persuaders: mmm who is influencing whom, and why?
• Money, drugs and lies: why not to believe everything published in journals
• The doctor isn't in: all about managed care
• When less is more: some ideas to cope with over-capacity and overtreatment in the USA

This book is a must for every health care improver who believes their own project is making a difference... The strategic and tactical issues raised in it really provide a new perspective.

Digital Engagement: From participation to partnership PDF Report

Life moves on. Things change, well, mostly.  What seems not to be changing is the methods of involving, engaging and interacting with the public.  Some public sector groups are starting to grapple with how best to use technology to best effect. For instance, I learnt recently that after 6 weeks on no replies to email and 30 minutes waiting time on phone calls, that the best way to get a response from our local Council Waste and Recycling department, was to tweet. Instant response. Instant relief. Problem solved fairly quickly.

So what is healthcare doing? There's a proliferation of Twitter accounts being set up but these are mostly used as another channel for advertising with little listening going on.

Public and patient engagement is mandatory for the NHS, especially for the new CCGs (Clinical commissioning groups).  Digital engagement is more than setting up Twitter and Facebook accounts, or sending out emails asking for responses to documents.

This report from Future Digital, published in June 2012 has some excellent strategic and tactical ideas on how to get with the times and to design interventions that are appropriate for our 21st Century.

Why I was almost ready to vote for the NHS to go private

At the end of 2011 I received a letter from my GP practice to say they would no long be operating "today's work today" so no more calling up in the morning to get an appointment on the day. Instead you call, get advised a GP will call you back, then you go in if required.  You can book an appointment in advance, though currently if you want any appointment in under 2 - 3 weeks you're unlucky.

So much for the sustainability of the "Advanced Access" program....

Despite over a decade of modernisation efforts in the NHS, not only is access an issue, but the sheer waste of processes is still in action. It's hard to be forgiving of a primary care practice who say they are overworked when they duplicate processes and add in bureaucracy.  

For example, I need two armfuls of vaccinations for a camping trip to Africa later this year. I called the practice to book an appt with the travel clinic to be told the nurse who ran the clinic was on holiday. No, there is no back up when she is away. No I couldn't book an appt for when she got back (third week of July) as I first had to go in and collect a questionnaire. When I've completed it I then have to take it back in to them. (I learnt afterwards, through my own efforts that this form is available online but this was never mentioned to me.). No, I can't book an appt for the vaccinations but I can book an appt for a nurse assessment, after I've completed the form and after she's read it.  After that I can have the vaccinations.

I lost the will to live just listening to the process. I work. I can't afford to take that much time off for 4 or more visits to the practice, at times that suit only suit them and their staff holidays.

The receptionist told me I should try the MASTA private travel clinic in Oxford.  So I did.

Within an hour I had completed the online form, been called back by a nurse, had a 30 minute telephone consultation, had the yellow fever medical waiver organised (it arrived in the post 2 working days later) and had an appt to go in and get my vaccinations at a place that suited me on a date and time that suited by schedule.  [I wondered why NHS Direct couldn't offer this service?]

Yes, I had to pay, but using what I bill for my time, going private in this case cost 25% of the total cost the NHS would have been for me in lost time and travel costs.

*****

I'd like to balance my concern about primary care with the stunning service I've received from Stoke Mandeville Hospital. I've had to go through two diagnostic treatments in the last month. The first I chose my time to go in and the second I had to rearrange due to illness and chose a time and date to suit my schedule. Both times I packed a flask, book and prepared to wait. Both times I was called in before I even had time to sit down.  Quick. Efficient. Perfect.

Productive 6: Are Patients Productive?

This is the sixth note in the the Productivity series by Sarah Fraser. You can find the earlier notes here.

Mark Russell commented on the first in this series and he got me thinking. Healthcare is different from being a consumer of say a car dealership. We know that. We can learn from techniques used in industry and we can apply them to our services to gain some benefits.  But I wonder whether we are too focused on programs such as Lean, or too focused on seeing the patient as someone with whom we need to engage?

The car dealership or company with be thinking about their customers constantly. It feels to me they spend time in empathy mode, figuring out how to make things easier for the customer. This ease translates into more sales (yes, I know I am reducing an entire academic discipline into two sentences.) They may even run focus groups.

When it comes to patients and productivity I am thinking the relationship is more than one of engagement. As a patient I am not seeking to be engaged with my local healthcare providers. I am expecting the provision to help me be a productive member of society. This means, for example, I don't' want to take an entire day off work so I can have an 8 minute blood test. Equally, I am prepared to to help the providers be productive by being an efficient and responsible patient - but I may need help to do so. If I have a chronic disease, then help me learn how best to manage it so everyone benefits from this productivity.

When the patient's interface with the provider is not productive for either party, then we have work to do.

Productivity 1: Operational Efficiencies are not enough

This is a the first in a series of Productivity notes from Sarah Fraser.  Are your productivity projects innovative enough?

Organisations, like the NHS, will need to do more than streamline some processes as part of their cost saving initiatives. Many projects underway are badged as productivity improvement yet mostly they are about basic good management. For example, reducing DNAs (Did Not Attends), improving the Discharge Process, holding less meetings, carrying less stock etc. These are important and help to provide a good base form which to develop more innovative approaches, however, I am concerned few organisations considering gains in productivity through redesign and reconception of processes.

Many managers may feel like they are standing in the equivalent of the Victorian cotton mill with a clipboard in one hand and a stop watch in the other. Yes, it is possible to gain more efficiency from a process. I argue, however, that the leaps in efficiency come from reconceptualising what is being delivered. For example, in many countries for at least a decade, group appointments are available for patients with long term conditions. This is one small example of how rethinking a process can create both an efficiency and an improved patient experience.

Patient Experience; report to help Boards build patient and public experience into quality fo care

If you are steeped in the healthcare quality improvement methods you will know how important it is to understand the patient experience. Scaling up project results to a wider audience does not mean the patient's views are no longer important. While the theory is obvious the practice is not. It can be difficult to engage non-executives and Board members with the patient experience and a new report on the Patient Experience  issued by Dr Foster in the UK covers the following:


Foreword 
Key messages 
The scope of this report 
What is patient experience? 
Good intelligence guide: The basics 
Good intelligence guide: Measuring what matters 
Good intelligence guide: Building an intelligent report 
Good intelligence guide: Advice from the sharp end
Board briefing: Intelligence types and uses 
Board briefing: 2010 policy directions 
Board briefing: Glossary 
Board briefing: The current state of play 
References 
Acknowledgements 

It provides advice on how Boards can produce a meaningful intelligence report on the patient experience. I particularly like the checklists and the brevity with which it is written.  They have nicely avoided the temptation to burst into theoretical concepts.

I found this report via Jocelyn Cornwall's blog at the Kings Fund - another good source of information.

6 resources for Patient Centred experience and Design (EBD)

Ensuring "involving patients" is more than rhetoric is a challenge. For any healthcare project, be it an innovation or an attempt to spread good practice and adapt evidence to work locally, engaging with patients and service users is a challenge.  This post suggest five resources to help you.


1. The Picker Institute Europe is a world leader in working with patients on a large scale and covering public, private and the voluntary sector.  Their remit is to work with healthcare providers and commissioners to:

• measure patient experience
• gather patient feedback
• analyse the findings
• develop action plans
• engage patients in service improvement
• evaluate improvements and
• communicate developments back to your Board and stakeholders.

Available from their website is a comprehensive toolkit for Using Patient Experience. It is free.

2. The USA based Institute for Patient Centred Design is unique in that it provides resources on design not only for healthcare professionals but also to patients; excellent way of practising what they preach! They have a number of documents and surveys (free) available online.

3. The Centre for Health Design has an evidence based focus. They have a number of evidence based design resources on their website and their Healthcare Leadership portal has excellent PDFs for download and access to a variety of multimedia resources. This includes an excellent review on the literature of evidence based design These are free.

4. The NHS Institute which covers the NHS in England, has a toolkit on Evidence Based Design which is available to NHS England staff (max 20 copies) for free, and £30 for copies for others. They also have a facilitator's pack available for purchase.

5. The UK Department of Health has published a toolkit on understanding detailed patient experience data. Although this does not cover design and involvement in depth it is a useful kit to help you understand what to do with the data you are presented with. 

6. The Design Council in the UK is running a project about Designing for Patient Dignity. While most of this covers the physical aspects of patient care, the case studies and design process make for interesting reading. They have published a 25 page booklet which is free to download. 

If you have any favourites I've not covered here then please leave your notes and a link in the comments on this blog.