The government ‘digital’ plans to provide patient access to GP records by 2015, raise a number of important questions, not least would access to just GP be of significant value to the patient on it’s own?
To explore this fully it is necessary to perhaps try to qualify who would most likely be the initial beneficiaries of online access to medical information, and in the process what, information would be of most value.
In the first instance patients can arguably be categorised into three broad health aware groups:
- The Less Active – The rest of us that are not ill, but then not necessarily especially healthy, and only take to visiting the GP under duress from a family member or loved one!
- The Pro-Active – Those that have an interest in their health, and contribute greatest to the Lycra industry, frequent exercisers that keep a (reasonably) close eye on their diet to try to remain in a healthy state, can frequently be seen jogging and or cycling.
- Long-term Chronic Condition Sufferers – Those with one or more condition, estimates for the number of patients in this category stand at approximately 15 million for the UK.
The Less Active
Hands up all those that feel they fall into this category?
If you could access your medical information online, would you?
Would on-line access to your medical information in itself influence a change in your attitude toward your own health and well-being?
The answer to at least the last two is unlikely, unless access to our information is delivered with something else to secure positive and on-going engagement, a good proportion of this population group might only ever access information out of curiosity.
That is until the transition into the Long-term Chronic Condition group, which a great many would be very likely to do, as a result of their indifference to matters concerning health and wellbeing in the earlier stages of life, when there is time and energy to do something positive about it (NOTE the author falls into this group)!
Pro-active and educational engagement on health and wellbeing as opposed to access to specific health information is perhaps more key for this group, potentially for these to be reached via social networking as the demographic tend to fall into the computer literate group that frequently access the Internet and communicate online.
This group may access their medical information online, indeed they may want more in respect of an ability to add information into their records themselves, to enable them to track their own improvement derived from their personal investment in trying to stay fit and healthy.
If an individual in this category is unfortunate enough to succumb to illness, worse case the onset of a long-term chronic condition, then they will likely need the least encouragement to engage and make use of medical information online.
Long-term Chronic Conditions
The first group are the prime candidates most likely to derive benefit from improved access to their medical information, especially if this information can be shared and / or accessed by those of their personal care circles, typically made up of family and friends.
The catch with this group is that their touch points with healthcare frequently numerous, as well as having on-going engagement with their GP and other health professionals within the practice. Their care in a great many cases will be more closely monitored and managed by other health and social care organisations, this could include, community care NHS trusts, social care providers and / or dependant on conditions, mental health trusts too.
The GP practice to which the patient is registered may only actually be engaged infrequently; consequently the GP record will not necessarily be the best and most up to date source of all information that is important in respect of helping a patient (and their carers) to manage their condition.
Consequently, access to medical information for this group really needs to encompass all of the potential many touch points they have across health and social care services to be truly effective and beneficial.
However, for this to be achieved a raft of challenges to be overcome, just scratching at the surface on some of the more obvious one:
Assimilation – appointments represents a good and simple example of an assimilation challenge, given the scope of a long-term chronic condition suffers touch points across different health care service providers, the provision of access to an effective online schedule for a patient requires interaction with a wide range of different appointment and scheduling systems.
Contextualisation – to be useful the information presented to the patient needs to be meaningful and understandable, and context represents an important consideration, especially if in the ideal, access to information helps the patient to understand the need to take appropriate pro-active action to avoid worsening of their condition.
Accessibility – a great many of the current demographic category fall into the group of more senior citizens that are not computer literate and unlikely to have access to the Internet. Consequently it is more likely that it will be younger family member(s) or others (friends) operating in carer roles that will be more pro-active with the patients information online. The issue of consent, privacy, information governance and shared access becomes key concerns to be addressed.
Presentation – will be key if again the information presented is to be usable and accessible, whilst a great majority of senior citizens will not have any inclination to become computer literate and familiar with the ways of the web, there are other ways these individuals can be encouraged to become part of a digital society, some will have smart phones whilst others would be comfortable with using a touch screen tablet device.
Making online medical information accessible across a wide range of devices should be a prime objective, with due consideration given to accommodating impairments, disabilities and multi-language capabilities to ensure no citizen is excluded due to disability, race or culture. Consistency in look feel and approach is also vitally important, otherwise the need to learn a new system every time a patient moves from one locality to another will only serve to undermine engagement and the benefits this should bring with it.
Online Engagement Today
Emergence of web and mobile app based technologies has provided a wide range of options for securing patient / citizen engagement with public services. Today a search of the Apple App Store for “NHS” will return a listing of 176 apps for the iPhone, and 44 for the iPad device, the Google Play App Store returns 155 apps for the IOS platform, some are the same apps, and some are not, a search on either App Store for “healthcare” generates a less than helpful greater return of results.
The range of apps is beguiling, some are location or service provider specific, some relate to general information on services, some are condition specific, some are provider specific etc. etc., and makes for quite a wide and varied experience for the end user, with a wide variation in approaches, addressing accessibility, presentation and most importantly privacy.
On the Internet the experience is just as varied and beguiling, and from an engagement perspective, services such as mainstream social networking platforms (Facebook, Twitter, LinkedIn etc.) are not able to offer the assurances on privacy and data protection required to underpin and maintain engagement, sufficiently to be utilised as engagement and collaboration tools on healthcare, beyond generalised messaging.
There is clearly much less of an appetite for a national approach towards systems with the current government than there was with the previous. However, without some standardisation and change in focus on approaches, the citizen / patient engagement process will continue to evolve through a disparate array of solutions that will only serve to disengage and disenfranchise the majority.
The technology exists to achieve the requirement within the target timescales set forth, with a bit more focus, and setting of standards, the opportunity to transform the health and social care engagement model is within reach. What is needed however is more focus on the production of requirements that set out common standards for engagement solutions that is sufficient to guide the wide range of third party innovators and ensure consistency in approaches.
Patients don’t need (and arguably don’t want) full access to their medical records online, to secure benefits from a digital online engagement process, some of the primary information requirements initially that could / should be available online include:
- Access to discharge notices and any supporting information necessary to ensure transition out of hospital and servicing of after care is effective and undertaken accordingly.
- Access to details on prescribed medicines, with perhaps the ability to add additional details on self-prescribed medicines so that this may be validated by a health professional (i.e. to confirm that adverse reactions may not be encountered).
- Access to care plans and associated information to support wellbeing and management of conditions.
- Access to a unified schedule of appointments, providing details of those with any health and or social care provider.
- Integration and meaningful presentation of information from tele-health / tele-care and assisted living devices that help the patient to stay safe and well in their own home.
- Contact details of primary NHS professional carers and support personal, with the means to communicate electronically on general issues.
And above all else, the ability for the patient to consent access to this information to members of their personal care circle, so that these become better engaged and informed on care needs and provision of assistance working collaboratively with NHS and social care service providers.
The benefit, all round would unquestionably result in improvements in quality of care and confidence that the needs of the patient are better understood through engagement of not just the patient, but those that know them best, their personal care circle.
Most significantly these benefits can be realised alongside significant reductions in costs with a substantial return on investment possibility, but only if the current disparate investments are bought together to address the requirements for consistency and uniformity in approaches that secure economies of scale.
About the Author
Presently in category 1, should be transitioning into category 2, but needs a big push and on-going encouragement, likely to become a member of category 3 in the next 10 to fifteen years.
In his late forties, married with two children and a grandson. Not a heavy drinker, but unfortunately was until recently a smoker (ugh, but now 6 months smoke free!). Grandparents deceased, one from cancer, another sadly suffering decline in later years as a result of dementia.
Was witness to family member’s sufferance of despair trying to care for the dementia patient home until it became no longer possible. Whilst the support services from the NHS and Local Authority cannot be described as poor, they could have been considerably better. Unquestionably online access to help services with better collaboration on health and care planning and service delivery could have been hugely beneficial.
Tele-health / tele-care services and assisted living devices would have offered much too, in terms of respite through reductions in need for 24/7 monitoring and on-hand attendance when conditions permitted.
Would like to see current service transformation to better patient and personal care circle engagement happen as quickly as possible, especially given that the scope of significant benefits extend right across the Quality, Innovation, Productivity and Prevention (QIPP) agenda.
E-Health Insider Article