Engaged patients have better outcomes

I recently returned from an international conference about health informatics.  The theme was about ‘making it personal‘ and the evidence is showing that engaged patients have better outcomes. But because healthcare seems to have an issue about “ownership” versus “stewardship” of healthcare data, the patient in effect cannot automatic access to their specific health information. Globally, patients are being enabled to access their electronic record. The catalyst for change and pace of transition has been twofold.

If engaged patients have better outcomes, why isn’t everyone clambering to ensure patients have access to their health information?

Firstly, health data is becoming big business. Microsoft Healthvault; Google (for a short period of time); and now Apple with their Health apps integrated to their devices, as well as others, are enabling ways of collecting, holding and allowing you to share your health information with whomever your choose in a secure environment. Secondly, since the US government policy moved for its citizens to have access to their information and downloading since 2010 the pace of change has been visible. From the development of the Veterans Association and the Blue Button to parts of Europe where the EU have funded studies into barriers to accessing records and now the Dept of Health (England) policy in the Five Year Forward View of not only accessing but actively contributing to your electronic health record is to become the norm from 2018

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So what does it mean? This means that patient is taking control in a variety of ways. The emerging of Personal Health Records (PHRs) is starting to shape access. The Mayo clinic describes them as “simply a collection of information about your health” PHR’s can be provided by hospitals or insurance schemes, but in the UK are starting to be aligned to patient or care portals. Whether these are part of a hospital scheme or as an independent standalone PHR such as Microsoft’s HealthVault for example, the key is the patient is in control of:

  • What data is collected (within the context of the software)
  • What data is kept
  • What is shared
  • Who it is shared with
  • How this integrates (where this is possible)

Healthcare is at a new frontier

While at this conference I heard a directly from Dave deBronkart a.k.a. epatient Dave. He tells the story of his health record and those of others. The inability to to access his health data. The implications of inaccuracies.  Once having access he is both empowered and is active in the treatment and care decisions he has to make. He has been instrumental in creating the  ePatient movement. But rather than me trying to tell his story, see here when he tells it via, it’s worth watching!!


Implications for health

So what does this mean to health and to patients? Image patients having access to their own health record. Patients having control on what information is shared and whom with. What does this mean for health? It means:

  • Patients are empowered and owners of their health
  • Patients having access and being part of decision making
  • It will mean that there will have to be transparency in documentation – of all healthcare providers, from doctors, to nurses.

The implications means that clinical staff will need to document  in a different way, as their documentation will be visible not to their colleagues but to the patient. The information documented will have new visibility and as such patients will have expectations on what that documentation means and will ultimately question. It also means when patients can actively contribute means that more time will need to be given to read the documentation rather than having to document.  Patients will be empowered, enabled, and engaged so that the decisions made will involve them so they become  active participants rather than passive recipients of care. As epatient Dave says in his talk, the world is going to utilise the most under utilised resource of all… the patient.

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