Increasing patient engagement has been at the forefront of thinking across many elements of the healthcare ecosystem for some time now. From involvement in research via, for example, the National Institute for Health Research INVOLVE initiative, to increasingly active and empowered patient advocacy and finally pharmaceutical industry moves towards ‘patient centricity’. This trend has manifest itself in many ways and has been driven by many factors – not least a frustration with paternalism and obstructive conservatism (see Tal Golseworthy’s excellent TED talk for more on this, and how to overcome it – in his case invent your own solution!).
Certainly empowerment and access to knowledge through the internet has increased patient access to information (and, inevitably, misinformation). But this information does not always enhance the patient physician interaction as it can be a time-stealer or clinicians feel undermined. Patient empowerment and engagement in drug development and clinical research is also a hot topic at present. But this and other elements of the so call PPI (Public and Patient Involvement) axis is, to my view, managed in a piecemeal way. To quote from the paper From Tokenism to Empowerment just published by Ocloo and Mathews “Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement.”
Partly in response to the trends noted above the pharmaceutical industry has in the past 5 years shifted customer-focus, or perhaps we should say emphasis, firstly away from prescribers towards payers and, more recently in a stepwise progression, away from payers to patients. Many companies now have Director level ‘Chief Patient Officers’ and not a week goes by without a meeting or a blog about how patient centric the industry is becoming (PharmaPhorum captures some of the recent zeitgeist, and weariness, in Tunnah’s musings).
I don’t doubt for a moment that the intent behind this move is a laudable (and indeed appropriate) response to evolving customer needs. There is also little doubt that there are pockets of brilliant ideas and projects which genuinely do engage patients in a better way and improve patient care. However, I share the worry expressed by others, and experienced by me, at many meetings on this topic that:
- the pace of adoption is slow
- the nature of the projects is digitally dominated
- there is very little sharing of best practice.
On the pace of change I quote Andrew Schorr from Patient Power at the recent Barcelona Eyeforpharma meeting. “Is this moving fast enough? No. Is it picking up speed? I hope so!” (see the full interview here).
On the issue of digital domination, a recent One Nucleus meeting showcased a range of patient-centric projects – all of them were e-health or app based tools. That is not to say that digital solutions don’t have an important role to play – they absolutely do – but it throws up the question of redundancy of effort and are we, yet again, neglecting the ‘great unwired’?
On the sharing best practice issue I share the views expressed in this excellent white paper recently released from Patient Focused Medicines Development. “However, current patient engagement is sporadic, fragmented and unstructured with no clearly defined framework or agreed process.”
I have had occasion to discuss my concerns and frustrations regarding patient engagement and involvement with quite a few folks recently (many of them experts in the field). It was during one of these conversations that I was asked ‘what are you doing about it’? A fair challenge and that became the seed of an idea which has now borne fruit. If in doubt organise a meeting, right? Well yes but this time I convened an open innovation workshop which was aimed at generating ideas – not just talking about issues and concepts (many thanks to OPEN Health for sponsorship).
In developing this multi-stakeholder meeting Astrocyte have taken on board these wise words from Alex Butler (at The Earthworks). In his timely and relevant post he encourages us to emulate the late, great David Bowie and:
- Take inspiration from diverse sources
- Always look to collaborate
- Stay current and stay curious
Our workshop embraced these three principles of diversity, collaboration and topicality.
The workshop has been and gone now and we had a really dynamic and diverse group developing some meaningful ideas on improving patient engagement, involvement and participation. Get in touch if you’d like to learn more about these outputs.
Phone: 07985 343417