Sweden might be onto something …

I spent Thursday and Friday this week in Cardiff at the amazing Society for Acute Medicine’s Conference (https://twitter.com/csubbe/status/860622431534317568). The conference was characterised by a wonderful absence of big egos, warmth and a fair dose of humour as one would expect if Drs Olwen Williams (https://twitter.com/OlwenOlwen?lang=en) and Meirion Llewelyn are part of the faculty.

Despite brilliant presentations by many of the speakers the undisputed highlight of the meeting was the talk by Chris Pointon (https://twitter.com/PointonChris?lang=en) that received a standing ovation. Chris is husband to the inspiring late Kate Granger who started the #hellomynameis hashtag and he is preserving her legacy: Kate was a doctor as well as a patient and in her latter role stumbled across the lack of courteous introduction by so many of her carers. Her focus on a simple message and brilliant usage of social media has made her campaign an outstanding international success.

It struck me that something so simple such as the introduction of doctors to patients could possibly be an issue. And how much this tell us about the relationship (and power gradient) between health care professionals and patients. Most of us would not enter a hotel or restaurant without introducing ourself yet obviously are able to forget this when addressing those who’s life might depend on our actions.

On my return home I found the British Medical Journal with a front page of ‘Give all patients access to records: If Sweden can do it, why can’t we? (http://www.bmj.com/content/357/bmj.j2069). Stephen Armstrong describes the journey of the Swedish health care system from initial tests with patient participation to universal access over a 20 year period. Resistance and anxieties were significant in the medical community. But from the experience so far patients are using their own data sensibly and there has been at least one reported incident where a patient found a life saving report about a new diagnoses of treatable cancer that had been overlooked. From not knowing who is talking to them patients will soon be able to know which doctor they saw, and what the doctor wrote about them in the records. Remarkable!

Patient engagement might still remain an issue but there are some encouraging reports: Research from the UK suggests that those with poor health are more likely to take up usage of personal records (https://academic.oup.com/fampra/article/28/2/188/635944/How-patients-use-access-to-their-electronic-GP). Subsequently this might explain why the elderly are not likely to be left behind but could well end up leading this health care revolution. Li and co-authors found evidence that older patients are more commonly engaged in using their electronic records then their younger counter parts (https://www.researchgate.net/profile/Han_Li18/publication/260009073_Examining_the_decision_to_use_standalone_personal_health_record_systems_as_a_trust-enabled_fair_social_contact/links/54db73660cf233119bc6292d/Examining-the-decision-to-use-standalone-personal-health-record-systems-as-a-trust-enabled-fair-social-contact.pdf). Those with poorer health and disadvantaged by their age might be the ones with the greatest opportunity of empowerment by Personal Health Records.

In this scoping review for NHS England on ‘Empowering patients through their Personal Health Record” (https://www.researchgate.net/project/Empowering-patients-through-their-Personal-Health-Record) Gabriel Mata Cervantes lists eight enablers of patient empowerment:

  1. system interoperability;
  2. accessibility to the personal health record and its content;
  3. traceability (ability to track past medical history);
  4. personalised content;
  5. capability to contribute to their personal health record’s content;
  6. high trust (accuracy, security and privacy) in the information and data;
  7. patients’ level of engagement in their own health; and
  8. patient-physician communication.

My instinct would be that the ability to contribute to the record (No 5) and symmetrical communication (No 8) will be the major pivot points. Beyond the mere practicalities this will convey ownership and be a physical representation of a more equal partnership between patients and those traditionally holding the key to the records: all those who access the record are also able to contribute.

Maybe patients will soon introduce themselves to their doctors when they are entering data into their own records with a friendly #hellomynameis ….!

#hellomyname is such an inspiration: what would be your slogan for a more emancipated usage of health care information?

 

 

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