This post is mainly for those in the UK, but the general principles could apply in any country.
Also it is a subject that ‘HairBear’ or the sites administrators should be, or perhaps already are, discussing for all CLL patients.
A fairly new idea World-wide is health participation. Doctors, working with their patients, to improve the quality of life of these patients. In the USA this would be e-patients.net which Susannah Fox does much to promote. Also the well followed epatientdave.com .
Much of our life with CLL involves checking data, the infamous blood counts, or the IG levels..
Thus a central repository for our data with Patientsnowbest has the potential for making our lives easier. In emergency situations the AE departments can pull up the data, or the GP in the area where we are visiting family members. Or just ourselves to check on our own complete blood counts after reading a new article on this webpage..
Thus if the administrators of this site and or Macmillan have not yet started a working plan with Patientsknowbest, perhaps now is the time to start.
Dick
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Kwenda
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Thank you for your Interesting post Dick. Are you in Southampton on the 1st? If so perhaps we can hook up? I can only confirm that I have been discussing this out of curiosity. not as CLLSA . It is very frustrating.
Their BMJ article: "Patients must have control of their medical records", struck a few familiar chords for me!! blog.patientsknowbest.com/2...
It's concluding passage highlights the problem of implementation:
"Every general practice in England will have to offer patients online access to their care records by 2015, according to the government’s information strategy for the NHS published in May.1 Currently only 1% do so. As the Department of Health acknowledges, this represents “a challenge to the culture and practices of some health and care organisations and professionals.”
But advocates of patient access to records now want to go further. They want patients to control their records, with the right to decide who may access them. As the information record is about the patient, the record is his or her property, they argue. Patient controlled records bring extensive benefits, they believe: better informed, more engaged patients; a more mature doctor-patient relationship; shorter consultations; fewer errors; and a means of integrating services—in short, that holy grail of modern healthcare, improved outcomes at lower cost.
This may sound counterintuitive to many doctors. Records could contain information that might alarm or even harm a patient, they respond. They may be written in jargon or—for the sake of clarity—in a frank way that patients find offensive or misunderstand. Patients might deluge doctors with trivial inquiries. Although the BMA believes that patients should have access to their records, it remains concerned about security.
Historically, medical records have been regarded as the property of clinicians or their institution. And although patients in the United Kingdom have had the right to read their paper records since the 1990s, few choose to do so. But accessing records online is much easier: it may stimulate demand for access and, with it, control."
I was only speaking with my own GP the other day about how can we work together to improve communication between the two health authorities that provide my own care. To try to bring together my cardiology, stroke and haemato - oncology history and; files - It seems that my body handles these together but not my regional health authority.
As usual a health consultation digressed into other areas (chasing up my referrals and places in variouse ques), this was made harder for my GP as she cannot access my data in other authorities from her screen. The data protection act was mentioned? We touched on NHS studies to enable access to patients records that they carried themselves, for example in data sticks or other central repositories. The data protection act came up again a few times, security,, also patients wishes, ability and the scale of the task, but also that the NHS has/is carrying out studies? I am myself considering putting together my own file combining everything to carry with me on journeys/holidays
Background information and research into what we can do in the UK from within our own health authority care would I am sure be very useful..In the past I have posted links to NHS resources to help people access their own information to enable them to carry essential paper information. Carrying access to encrypted computer, information on a cloud or a website data base would seem more practical but how do health care workers access this information when working within a system not geared up for this? Security seems also a great barrier.
Here is the link to information I have put together to aid UK people access and make use of their health records:
(I noticed at the foot of this article prepared a year and a half ago I was embarking on the task of bringing together my records, maybe this year?)
To my knowledge the CLLSA does not have a working group exploring this area at the moment. But then we are very small and have few resources. CLLSA are currently investigating the development of an advocacy role to raise our profile and lobby for greater access to treatments as the treatment landscape changes.( We have appealed to membership for people to come forward who could assist with the development of this but have had little response. We need resources and would welcome support. Our Chairman can be written to at: arthur.graley@cllsupport.org.uk
However Macmillan who are on a different scale altogether, I would expect them to have information further to their own explorations and work in this area.
Thanks Nick for clarifying the UK position on this.
Last week I was a bit horrified that an acquaintance of mine telephoned to cancel a meeting by saying that, he was rushing off for a treatment of R-CHOP, and he had no knowledge of his disease what-ever..!!
He is only 70, a retired school teacher, who taught computers at his school, so there was no problem with accessing the information. On my insistence he went back to his GP doctor and requested a copy of his comprehensive blood tests. I rather suspect he has had CLL for a while and now suffered a Richter’s Transformation.
But this is apparently what we are dealing with; the old idea of doctors as somehow Gods, who are completely infallible and the patient just has to accept whatever is offered him. No patient questions and no second opinions.
Of course as time passes, we will see more and more of the next generations, who are used to checking things on Wikipedia, are fully computer literate, and ready to ask questions.
In the meantime some education is required for patients..
I was not aware of a UK government plan to offer patients online access to their care records by 2015. That is a truly great step and goes some way to ease my thoughts about a patient’s health data.
I was envisaging the CLLSA group joining the Patientsknowbest group as a block, so that all records were easily accessible. The Patientsknowbest group have already put in place mobile apps so that records can be easily accessed by iPhone, Android phone or tablet. Thus a patient could pull out their iPhone to show an A & E emergency doctor all required information, or have a USA style ‘DogTag’ with password access etc.
Unless the CLLSA group arranges a data system with Patientsknowbest, perhaps the easiest solution could be to carry your own paperwork when everyone visits family or friends in another part of the country. A simple system you are working on yourself.
Alternatively put the data on a smartphone, or use a small and free DropBox account and have all data ‘in the cloud’. None of that is too difficult to arrange and it could save your life OR assist you getting some faster treatments in the event of a shingles outbreak.!!
For your own situation Nick, as you wrote that you have different files within the same regional health authority, might I suggest that you access a computer from one office and then copy the data to a DropBox account, and then do the same thing with the next department. This would give you your complete records in one place perhaps. Your situation cannot be special in that many of us visit more than one discipline at the hospitals.
I myself deal with three, Haematology/Oncology plus then the Gastroenterology/Colon cancer section and then the Dermatology/skin cancer section.
I do not think it a good plan for anyone with CLL to wait until 2015, when in theory some governmental system will be set up. We should look after ourselves and set up our own either simple paperwork system, or a DroBox account.
You asked about Southampton on July 1st. Regrettably I am still suffering after a hospital visit on June 18, and would not be in a position for travelling by July 1st.
thanks for your thoughts, my files covering different disciplines are held within different health authority systems as Heamato-oncology is contracted to another from by my own region.. I can combine hard copies of everything from both (however so much else eats at my time- and circumstance has delayed this). I have never had a problem myself viewing information or graphs from within each authority via the Doctor during a visit. The greatest problem for me has been getting one regional authority to allow the other access to aid day to day care!!
Human error also has caused me a lot of hassle. Only the other week I was admitted via emergency, and in error the inputting medic got my date of birth wrong. So consequently re-registered me with a new patient number (there were now two of me). I was left languishing in their system disconnected for a full 12 hours having to constantly give history to physicians unable to locate my correct file.. before a diligent secretary was able to correct the problem the following day. ( up to that point Information I provided seemed of little relevance to them, I was what the system now said I was Nick2 with no history).
It's bad enough having to repeat parrot fashion CLL information each visit, without having to do the same about conditions/histories that a regional facility does not have on file.
I think we all have a responsibility to advocate for ourselves. each individual will have challenges to overcome to gain access and knowledge about their records and what will suit their needs. Chaya always used to point out that no one has more skin in the game than you. I hope the link to NHS choices information about your rights and how to go about accessing your information is still helpful and current; community.macmillan.org.uk/...
If today only 1% of GP practices are in a position to allow patients on-line access to their information I have little faith that all will have access by 2015. If healthcare workers are not able to access digital information because they are not geared up to. Then housing personal information digitally on a cloud or on-line data base that can be accessed by your own mobile does sound interesting. Looking at the size of both my files in each region, I would need a sack barrow to port that in paper!!
On-line CLL care in the community projects are being piloted and launched in the UK by a few NHS trusts. They will revolutionize how CLL is managed empowering patients by allowing them access to their own encrypted clinical account, information and access to on-line specialist clinicians, supported by specialist community nursing. It is the CLLSA hope that these evidence benefits to enable other trusts to implement thier own networks. These types of networks could become invaluable to the CLL patient in a facility off patch.
I am sorry we will be unable to hook up in Southampton,
Thanks for yours. Nick 1 and Nick 2..!! Which one did the wife and family recognise when you arrived home..!
We could start a LONG and UNENDING thread on this platform about the hazards of dealing with the NHS….
BRIEFLY.. My doctor and my Heamatologist will send me a SMS text to remind me of an appointment.. Two weeks ago the mobile phone rang, I looked at the number and realised it was nobody I knew, so probably someone trying to sell me something. I did not answer it and no answering machine message was left. 24 hours later the phone rang again and again I did not answer. 24 hours again later the same… Finally after 4 days of these calls I answered and it was the hospital with an automatic telephone dialling system telling me that I MUST NOW confirm my latest appointment or I would loose it..!!
So one part of the SAME HOSPITAL sends an SMS text to remind you of an appointment, while the other department has an automatic telephone dialling system…!! No coordination of systems and I bet serious money was spent to buy each of these two systems..!!
The Care in Community project you write about makes much sense, as overall this should save confusion and money, as well as leading to a healthier community.
The more one experiences the nuances of looking after one’s CLL and dealing with doctors the more I like the idea of having my health information on a DropBox account in the cloud. Even if the hospital computers cannot access the internet there will always be a nurse, doctor or friend who has a ‘Smartphone’ or tablet that can be quickly used to pull out the relevant data. Note that the DropBox service is free for small accounts. Time for me to set up a second DropBox account…...............
Chaya’s comment is good, we must just look after all this ourselves, and not rely on the governments multi million pound computer IT systems..
The idea of online records with me being able to access mine is good. Forty years in IT roles, mainly technical, tells me this is and has been technically possible for years. Only the people running the systems involved limit this technically. In my view the sooner the better.
I do for for those who get information they cannot the come to terms with and I've no idea how to handle that, however I think at a personal level I'm not one of them. Thinking back to the day last June when my doctor sat in my kitchen (it was already a weird feeling seeing him knock on the back door unexpectedly) I don't remember any desire to leap off the nearest cliff. However, there are those that might and they need to be catered for.
I prefer to be in 'control' of my own data, in the case of medical records I don't mean the ability to change them, however, adding comments could save doctors time in the end
I take the example of my consultant, we have communicated by email between visits, when I have important questions, especially valuable to me during my FCR treatment in the second half of last year, and on Tuesday during my check up before I had the chance to ask he handed me to pieces of paper with my FBC and Chems for my records. I know online would be nicer, but I input them into a tracking spreadsheet that has traffic lights on it so re-keying is necessary.
On the idea of block joining of another group, I'd not agree to that, my data, my choice.
This discussion appears to be well timed as the news from Northern Ireland says that a new NHS patient record system will be initiated TODAY!!
Presumably this would have assisted Nick with one of his recent problems of dealing with two health authorities.
It would be interesting to know if this computer IT system in Northern Ireland is in fact a test for what will be rolled out for the remainder of the UK..???
I can understand Rob’s viewpoint when he writes above ‘ my data, my choice ‘.
This all depends upon personal circumstances. I am retired and care not who looks at my health data; however if I was employed I would worry that company bosses might be trying to access my data….
But also remember that much of this data is likely to be in a doctor’s obtuse language; so the casual looker is not likely to be able to understand much of it. Those reading these pages have taken the time to understand our disease, but the vast majority of the public would soon be lost in the complexities of say a FISH test..!
Unless someone comes up with a better solution, perhaps the safest and easiest way is for us to use a cloud storage system, such as DropBox. Then our records are under our control, but still accessible worldwide with even the most basic of smartphones, tablets or computers.
I guess gaining access to the data first before you decide what is needed is the more important. Depending on your post code you may end up with on-line access to a patient portal ahead of others or not at all?
It seems there is much work afoot in the different national health systems. each has it's own strategy and procedures at different levels of progress. I did a little work looking at our different nations and have put together a few interesting links to information. Starting with England and Wales I have pasted them below. I will add Scotland and Northern Ireland links shortly. probably editing them all together to form and post an information blog. Reading the news from a 2110 article on the Scottish government site scotland.gov.uk/News/Releas... it seems they were ahead of the game? (I am wondering the outcome of this early trial?)
"Online patient access to health records
07/04/2010
A new secure website allowing patients to access and update their own health records online has being launched in Ayrshire and Arran.
The online Patient Portal is to be trialled in two GP practices - Townhead Surgery in Irvine and the Kilwinning Medical Practice - over the next six months. It allows patients to take more control of their own health by accessing and updating their records from anywhere with an internet connection.
The portal means registered patients can now log in from the privacy and comfort of their own home - or anywhere else with an internet connection - to undertake a number of tasks"
The Department of Health Information Strategy – “The power of information: giving people control of the health and care information they need: gov.uk/government/publicati...
“The NHS in England is introducing Summary Care Records (SCRs) to improve the safety and quality of patient care. It will give healthcare staff faster, easier access to reliable information about you to help with your treatment.
Today, all the places where you receive care keep records about you. They can usually only share information from your records by letter, e-mail, fax or phone. At times, this can be slow and sometimes things get lost on the way.
As at 26/4/13 almost 27 million records had been created across England. Having an SCR gives authorised healthcare staff a quicker way to get important information about you, in an emergency or out-of-hours.” systems.hscic.gov.uk/scr/pa...
"A Summary Care Record is an electronic record which contains information about the medicines you take, allergies you suffer from and any bad reactions to medicines you have had.
Having this information stored in one place makes it easier for healthcare staff to treat you in an emergency, or when your GP practice is closed". Download the Summary Care Record patient leaflet (PDF, 232Kb) connectingforhealth.nhs.uk/...
Dr. Simon Eccles explains how Summary Care Records help in out-of-hours and emergency settings.
The record that is being introduced in Wales does not form part of the English electronic summary care health record. In Wales, we have a different approach. wales.nhs.uk/sites3/home.cf...
THE INDIVIDUAL HEALTH RECORD (IHR) is a summary of your GP record, which will let GPs and nurses working in your local Out of Hours Service see some basic information about your medical history.
YOUR INFORMATION, YOUR RIGHTS: nhsdirect.wales.nhs.uk/life... This section of NHS Wales Direct explains why NHS Wales collects information about you and how this information may be used. It also tells you about your right to see your health record and how to gain access to it.
If you want a copy of your full GP record you will need to contact your GP practice.
The Individual Health Record is 'view only.' It can only be accessed under certain conditions by authorised staff using a computer within an Out of Hours (OOH) clinic or Medical Assessment Unit (MAU).
A health professional must have patient consent before accessing the Individual Health Record, unless the patient is unable to do so.
The Welsh Master Patient Index when fully operational should identify all files against an individual across the Welsh national region." Who can and how this data can be accessed I am unclear about.
"THE MASTER PATIENT INDEX (MPI) wales.nhs.uk/nwis/page/52571 is a system that makes it easier to ensure patients are correctly identified and minimises the number of duplicate health records held for each patient.
It will reduce the number of patient search results returned for clinicians using THE WELSH CLINICAL PORTAL wales.nhs.uk/nwis/page/52547 and ensure the correct patient is identified.
THE WELSH CLINICAL PORTAL is a secure healthspace uniting key patient information from the many computer systems and databases used in NHS Wales, such as those found in pathology, radiology, cancer and primary care settings.
The portal provides fast access to information about medication, referrals and discharges, allows health professionals to request tests and results from various sources and ultimately improves patient safety and a reliance on paper records.
It also gives doctors and nurses a personalised workspace with access to their own relevant patient lists."
LATEST ON MPI
“The Master Patient Index (MPI) wales.nhs.uk/nwis/page/52570 has now been completely loaded with the demographic details of 17.5 million patient registration records from 22 separate patient information systems, ensuring proper patient identification.
The MPI currently provides a patient identity service for LIMS as well as being a data quality tool for health board medical records departments.
Further features will allow other national systems to query the MPI before registering new patient records to avoid duplicate registrations and receive demographic updates. This will help ensure details are kept up to date across all the major patient information systems.”
Hi to everyone I currently use the Patients knows best website on behalf of my wife, she has ailments but nothing related to CLL. we upload her monthly blood tests and can send messages to her consultant and specialist nurses. I have to say we like using the site because we get some access to the consultant in between consults which is almost impossible short of a emergency normally. I dont this facility with my CLL specialist, but can always speak to very knowledgeable CLL specialist nurses who can nearly always answer my questions and are nice and approachable. Slightly off topic I strongly recommend everyone with CLL being seen by a CLL specialist rather then a Haemotologist/oncologist. I made the move and know I did the right thing because the Haemotologist had seen and did deal with CLL but it was amongst an array of other things he dealt with. The CLL specialist is dealing with CLL all day every day.
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Mode of Progression After Frontline Treatment Predicts Clinical Outcomes in Patients With CLL
