Thankyou. For anybody wondering how we actually administer the questionnaire and what other information we provide to help patients understand the issues relating to giving patients access to records and understanding please see
Our whole explicit consent process is available online for you to see
Great comments raised. The questionnaire is not a "stand alone" - it simply tries to raise the important issues that patients and carers should consider. Question 7 was originally quite a big question about how to feedback if there were any concerns raised and what to do. It is higher up the list because psychologically we want people to finish with a positive thought in their head and not a "negative" one.
Following the questionnaire, patients receive an email which informs them that they have got access to their records. This includes information on what to do to help them understand their records including the practice website as a resource. http://www.htmc.co.uk/pages/pv.asp?p=htmc0561
We provide a glossary for abbreviations which we add to when we come across new abbreviations http://www.htmc.co.uk/pages/pv.asp?p=htmc0148
Essentially we have built a workflow to support patients and families. The questionnaire is just one part of the process. There are other aspects such as preparing our reception staff, informing what our clinicians say to patients and also learning how to promote this inside the consulting room which is where the "magic" really happens. Patients are invited to raise questions wherever they may be - we call this "teachable moments". Watch this video to see what this is about.
The questionnaire is really an opportunity to inform patients that healthcare is available 24/7 for all. This is not an IT solution but rather a way of delivering care in the 21st century which every clinician, manager and patient / carer needs to know about. This is the paradigm shift in healthcare. Please feel free to contact me directly if you would like to know more and be able to offer this for your practice too using your own resources too.
Let's join together and build the future now!
firstname.lastname@example.org or @amirhannan
Thanks for the vote of confidence. Now please share this with all you know throughout the world. This is the paradigm shift in healthcare where we build confidence and trust together by journeying with those whom we serve and share each other's knowledge and experience together. We have gained massive confidence by using this process of continuous improvement. Please contact me if you would like start offering patients access and understanding safely too using your own resources. Let's join together and build the future together! email@example.com or @amirhannan
Thanks Farzana. Can you explain how you have got consent from patients for test results and other parts of the record to be shared with the pharmacy? How are you signing patients up? What information are you providing for them ?
Some great comments and thoughts here and lovely to see such positive responses too which are really heartfelt. I agree that this is not yet ready to be rolled out across the country as a whole. Much work needs to be done besides just providing a link to a website that gives patients access. The challenge as I see it is moving from enthusiasts to making this business as usual for the many (if not all). Many of the challenges have been met and overcome. There will never be a perfect solution because medicine by its very nature is messy and not an exact science. We cannot legislate for every eventuality. A case in point is trying to describe what harmful data is. It depends on who determines what is harmful and the context. This is why solutions that are drawn up need to recognise the choices clinicians, managers, patients are carers within the local establishment need to make and what resources and support they have in place to make them. Of course there is a wider role for the wider NHS - not to impose for the reasons Yvonne Newbold so eloquently puts as well as Geoff's assertion that certain things may be challenging. At a national level (or regional or CCG or even at a practice level), we need guidance on what we know and what needs to happen next. In my previous role as Clinical Director for Patient Online Services for the NW of England NHS, we had an advisory group (which included Ingrid Brindle as a patient representative) and produced this report which provides many of the answers to the questions on how to do it including toolkits, material we produced based on our collective, extensive knowledge and experience and some of the steps that are now necessary to enable this to happen at scale. You can download this here
You may also wish to see Ingrid Brindle describe what this means for her to see the other viewpoint when we start to see things through the eyes of a patient and the daily challenges she faces and how she overcomes them. She is not alone. We now have almost 2,500 patients with access to their records and understanding too and they are growing in number and in their confidence in their ability to manage their care. See testimonials from patients and watch Ingrid speak.
To see how please see our practice-based web portal http://www.htmc.co.uk
If you would like to know more and even get involved in doing in this in your own practice then drop me an email firstname.lastname@example.org or follow me on twitter @amirhannan where ongoing conversations are happening. You can also follow Ingrid, chair of Haughton Thornley Patient Participation Group on @ingridbrindle and learn more about her views there too.
This is the Partnership Of Trust that we talk about and share with you
Thanks Geoff for your thoughtful comments here and concerns raised. I understand those very concerns too which are real. There are risks even without accessing records which we have to manage as we do not live in a zero risk world. Sharing the concerns with our patients and the wider world is key to enabling them to make informed decisions based on their priorities and needs. We have therefore developed an extensive online explicit consent process that tries to recognise these concerns too.
We have used this process for the last 7 years and over 2400 patients are now enjoying Records Access and Understanding. Although I recognise your concerns, we have not experienced any of them partly because of our vigilance and also because we share our concerns directly with patients too to help them decide together (Shared Decision Making). Here are YouTube videos we made 7 years ago with a patient of mine to discuss the issues and a whole load more that you may not have considered too
Here is the latest data on how many patients have signed up for the service. This continues to grow, Notice how many patients from so-called vulnerable groups are actively asking to get access to their records?
This shows that if we put systems in place, develop a culture to support a Partnership of Trust between patient and clinician and supported by the manager then we can overcome many of the concerns and move to the biggest issue - how do we spread this so that others can also benefit from the services we are offering at Haughton Thornley Medical Centre (http://www.htmc.co.uk).
Let's keep the conversation going on twitter (@amirhannan or @htmc0) so that others can also bring their experience and knowledge to the fore too!
You have done a great job in raising awareness of the issue, Let's now put solutions in place and move the whole system forwards. I would love to come and visit you and learn more about your own experiences as it seems we work in very similar places with very challenging patients who are very appreciative of what we do for them. We are also very appreciative of their support when we do things right as well.
Thanks Hadrian for raising some really important issues here that I think do need further consideration. In fact I discussed this article in a presentation I gave to GPs hosted by Greater Huddersfield Clinical Commissioning Group in a talk I gave with a patient who has access to their records too and who talked about what it means for her supported by the practice. You can now see the presentation as well as the questions raised by clicking on the link below. http://www.htmc.co.uk/pages/pv.asp?p=htmc0474
It would be good to hear what others think too? @amirhannan