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Guest blog from Dr Tom Margham, Tower Hamlets GP and member of the Taskforce for Multiple Conditions Expert Advisory Group

I graduated from Manchester Medical School in 1999, the same year that Don Berwick delivered Escape Fire, his keynote speech at the 11th Annual National Forum on Quality Improvement in Health Care. I wish I’d read this piece back then, but in fact came across it about eight years ago and can honestly say that it changed the course of my career.  20 years on this speech is still as relevant as the day it was first delivered. Don tells a very good story, and this is a moving and personal account of his wife, Ann’s, interactions with US healthcare during a serious illness. It’s a real call-to-action for those working in health and care that highlights vividly how medical staff - good people working extremely hard to help their patients - nonetheless work in a system that seems perfectly designed for making errors and failing the people they are there to serve. 

One of the main things that needs to change, argues Don, is access to consistent, reliable information. He calls for us to regard information transfer as a key form of care: “The medical record properly belongs to the patient, not to the care system. It must become an open book to the patient, available without restriction, hesitation, or suspicion”. 20 years on from this statement only 8% of people registered with a GP in England have online access to their full medical record. That’s an awful lot of people who are not benefitting from 24/7/365 easily accessible information about their health and care

If you have multiple long-term conditions it is likely that the only person who knows what’s going on with all of your care is you. That said, whilst it is far from perfect, your GP medical record is probably the most complete account of your medical care to-date. Many people will be aware of online GP services such as ordering repeat prescriptions and booking appointments and indeed about a third of people registered with a GP have access to these functions, but far fewer people are aware that they can use online services to see their full GP record including test results, consultation notes and hospital letters.

Yet to make this situation change requires a cultural shift. In part for the general public, but in the main for the medical profession. I am writing this piece following on from a previous blog post from Wendy Broderick and would like to congratulate Wendy on her persistence in getting access to her full medical record! It took three visits to see the practice manager of her surgery to achieve this and yet now she is feeling the benefits, and incidentally the practice is also benefitting as she is needing to make contact less often for things like test results.

My own experience in, as yet unsuccessfully, trying to obtain my full online GP medical record, is that the process is far harder than it should be. It has felt to me that the request has been viewed with suspicion by staff in my GP surgery, as if this isn’t something I should be asking for, and there have been a lot of unnecessary barriers put in place. I think this is in part because they are not yet familiar with this kind of request and therefore the process is not smooth, but I also know that many colleagues worry that giving access to the full record may generate anxiety for patients and additional workload for GP practice staff. Some are concerned that people will find errors in the record, which is a shame given that correcting errors in the record is one of the main safety advantages of people accessing their record! 

My view is that people with long-term conditions have the most to gain from being able to view their medical records easily:

  • making sure diagnoses and medication lists are up-to-date and correct
  • being able to see test results and hospital letters
  • having the ability to share critical information at any time in other care settings e.g. outpatient clinics or A&E
  • being able to give proxy access to people you want to share information with e.g. carers or family members

At the GP practice where I work in Tower Hamlets, East London we have taken the decision to activate access the full record as a default for all newly registering patients and are working hard to increase the uptake with our existing registered patients. We know that getting information into the hands of those that need it most is one of the best things we can do to help people become more active partners in their care. 

So what are you waiting for?!

Some useful links for getting access to online services including full record access are below.

Read more about local approaches to supporting people with multiple conditions here