Working with patients online: tips for the real world

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Presentation by Dr Mohammad Al-Ubaydli from Patients Know Best as part of the Health 2020 conference at the Royal Society of Medicine.

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Working with patients online: tips for the real world

  1. 1. Royal Society of Medicine 2009 / 05 / 19 Working with patients online tips for the real world Dr. Mohammad Al-Ubaydli
  2. 2. The banality of good I like to focus on low-brow tips rather than high-brow hype Computer originally seen as barrier between patient and GP But you just had to turn the monitor around Computer becomes a bridge, not a barrier But the future really is wonderful because of participatory medicine
  3. 3. A bit about me… Trained as physician at the University of Cambridge. Trained as programmer and worked as NIH Staff Scientist. Honourary Senior Research Associate, UCL Medical School. Continuing research on PHRs from 2,700 US hospitals, new book in 2010: book.patientsknowbest.com
  4. 4. Roadmap How to work online with your patients 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  5. 5. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  6. 6. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records
  7. 7. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Data by clinicians for clinicians
  8. 8. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Easing the patient’s burden Scheduling appointments Ordering medication refills Secure messaging Access to the EPR See: Pyer et. al 2004, Ralston et. al 2007.
  9. 9. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Data by patient for patient Powerful but unstructured NHSmail users have mailbox shrunk 06 Feb 2008 NHS staff who use the health service’s email service NHSmail have been informed that after a recent move to Microsoft Exchange their mailbox size has been capped. Some 80% of NHS accounts have been capped at just 200Mb, which appears miserly compared with the hefty 6Gb offered by Gmail for free, or the 5Gb offered for free on Windows Live Hotmail.
  10. 10. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Markle Foundation’s ideal PHR: Access controlled by patient Lifelong records Information from all Universal access Private and secure Transparent Easy exchange See: Connecting for Health, 2004
  11. 11. Some definitions Clinicians Patient Electronic patient records Patient portals Personal health records Personal records Our PHR helps clinicians help patients
  12. 12. Why do this at all? There is no other way to cope Aging and obesity mean more illnesses per patient Modern medicine means more clinicians per patient Budgets and workforce have reached their limits Your patient is the newest and best member of your team Google means patient more useful than ever Work together online to reduce stress in clinic See: Chen 2009
  13. 13. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  14. 14. Stick to patients you know Safest for known patients Explain that service is not for emergencies Have a low threshold for asking patient to come in, e.g. because an examination may uncover something that would change your management The longer your team has worked with the patient the less likely they will leave out important information Services do exist for new patients For example, 3G Doctor has detailed questionnaire followed by video phone consultation
  15. 15. Assume your writing is read Your existing notes are already owned by the patient See: Data Protection Act and GMC guidelines Data Protection Act 1998: All your notes may be read by a lawyer one day Responding to access requests So write as though everyone is reading everything 5. A request for access must be made in It is not hard to write transparently writing, and no reason need be given. Bad news is fine if it is written objectively, e.g. “Child Subject to any applicable exemption, is dysmorphic”, or “I have no evidence that what patient said is true” the applicant must be given a copy of You must write complete notes as part of your duties as the information and, where the data is a doctor: do not hide the clinical truth not readily intelligible, an explanation Protect confidential information by separate set of (eg of abbreviations or medical notes, just like GU specialists keep their notes separate terminology).
  16. 16. Say sorry and thank you (early and often) The medical notes are full of errors E-patient Dave* showed the errors in insurance-based medical records About 30% of medical notes have errors in them Finding and fixing these errors is important but laborious Your patient will gladly help if you say sorry and thank you Sorry works (see: www.sorryworks.net), no one expects perfection or cares about blame, but your reaction determines the patient’s reaction Saying thank you means the patient will help you even more next time * Dave deBronkart and I are on the Editorial Board of the Journal of Participatory Medicine
  17. 17. Learn from patients Online forums by and for patients teach thousands of clinicians already Ask your specialist nurse to spend time on a forum and then teach the rest of the team what he / she learned
  18. 18. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  19. 19. Protect patients from relatives… Relatives may bully patient You must assess whether or not the patient can make independent decisions from their relatives Young and disabled particularly vulnerable If in doubt, do not grant access Use in-person authentication Mailing passwords means relatives can get access Once you have in-person authentication you can continue with electronic communication alone
  20. 20. …but make full use of relatives Relatives are wonderfully helpful They often care more about the patient’s health than the patient does They would like to help but have lacked the legal and technical tools to pitch in With consent, online work is excellent use Help the family Chief Medical Officer Typically female, forty and very busy They have to manage the health information of parents, children and spouse, often while employed
  21. 21. Learn how to type You will benefit so much Personal life: booking tickets, writing emails, participating in forums Daily work: everything is faster, and you do not have to hide your typing from patients any more If you spend an hour, you gain more than an hour Do not wait for saviour – there is none Retirement still leaves you with 22 years that you have to struggle without proper typing skills Speech recognition will never be as fast as typing, and will not be good enough within the next ten years Learn to fish for free at http://tuxtype.sourceforge.net/download
  22. 22. Roadmap 1. Basics: definitions, and why do this at all? 2. Clinical tips 3. Social factors 4. Finances
  23. 23. Start asking for payment US payers recognize the value of working online by paying for it Best outcomes when payer and clinician work together Early adopters began before getting payments Now get paid less for online consultations but these take less time than in-person consultations do No one will pay you… at first If you don’t ask, you will never be paid When you ask, you will still not be paid But if you ask, then start doing the work, and have results to show for it, you can get paid
  24. 24. We built our software for this Secure NHS web site Patient writes message to you Ticks box for topic: this is what you use for analysis in the future
  25. 25. We will help you get funding East of England Development Agency is funding us to work with PCTs to fund work of clinicians Secure messaging saves time for staff and patients This saves money for NHS We are teaching this to PCTs If PCTs agree then they would fund secure messaging This is part of world-class commissioning Email us on pct@patientsknowbest.com
  26. 26. Dr. Mohammad Al-Ubaydli Patients Know Best me@mo.md Thank you for listening Questions please!

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