Tunnah’s musings: Patients’ lives are more important than their data

On February 28th, Rare Disease Day, pharmaphorum’s Paul Tunnah moderated a tweetchat exploring several issues, including where the balance should be between protecting patient privacy and open data sharing to drive new treatments.

Patient data is a real hot potato of an issue right now, especially in the UK where the government roll out of the Care.data project has been put on hold, while the media frenzy over protecting patient privacy simmers down. It is a debate that cuts to the very core of how the information age has changed the world. In theory, the collective ‘big data’ now available across individual patients via healthcare systems could be used to support better profiling and treatment, but equally patients are rightly concerned about their privacy.

But are they really?

“Patient data is a real hot potato of an issue right now”

It is an area where a lot of sweeping assumptions are being made (I’m quite sure I make some in this piece), but without necessarily an informed view or evidence behind them. For this reason, I wanted to explore the issue on a recent tweetchat I moderated about the challenges of the rare disease space, which is acutely affected by this problem. This is because when you have perhaps only a handful of patients globally with a particular disease, the chances of them being identified via anonymised data are much greater.

One of the questions put to the participants (including medics, pharma, patient associations, analysts and patients, their families and carers) was the following:


The response from the patients and their representatives seemed to be pretty clear on this one (see below). Their focus was firmly on finding effective treatments for their conditions and those of their loved ones. For them, data protection was a secondary issue to tackling the problem itself. In fact, there are a number of clear examples in the rare disease space where they proactively go much further the other way, sharing information as widely as possible in the hope of finding a cure. For example, see the amazing work done by Melissa Hogan to help her son via the Saving Case campaign.

As one participant, who is a vocal advocate for patients’ rights about their data after losing her husband to kidney cancer, succinctly put it, “the grave is really private and not what we want“.


It certainly got my attention and prompted me to ask whether we have really done enough to understand how patients actually feel about privacy, or are we assuming and obsessing on the wrong things when we focus too much on data protection. The above tweets paint a clear picture of that being the case, but may not be a representative sample. Indeed, a medic shared his thoughts from meeting patients on day-to-day basis, which were that privacy is still very important to them (although he acknowledged there could be a US-Europe divide here).

“The grave is really private and not what we want”


Len Starnes, an industry analyst, also revealed that a recent survey in multiple sclerosis showed that 60% of patients here would share data in return for benefits. But again we have to be careful in the interpretation – sharing data is not necessarily the same as revealing personal identity.


So what does all this tell us?

One clear theme to emerge from the discussion was that patient input, in terms of hard data or more direct qualitative and quantitative research, is critical to addressing disease challenges, particularly in the rare disease space. EURORDIS, the non-governmental patient-driven alliance of rare disease patient organisations, affirmed that the pharma industry must involve patients in the discussion around treatments, while also acknowledging the practical difficulties of doing so (see below). But a valid point was also made, which for me cuts to the very heart of the whole patient data privacy debate, which is that patients who share data must then understand what is being done with it and what the potential benefit in doing so is for them, or others. If the UK Care.data example can learn anything it is this – the focus on patient data issues has been too much on the negatives rather than accentuating the positives.


My conclusions are that there are still very disparate views about protecting patient data and we need to understand these better in order to identify the solutions and how to articulate them to avoid scare stories. We also need to start thinking collectively, rather than individually. The opinions of patients and their support network are vital to this process.

“It is worth remembering that at some point in our lives we will all be patients”

It is worth remembering that at some point in our lives we will all be patients. My fear is that, right now, those who are fortunate enough to be healthy worry a lot about protecting their data, but when illness strikes privacy goes out of the window and the most important thing is finding a cure.

By then it may be too late.

This debate is too important to leave to evidence-less spin and supposition. It must involve all healthcare stakeholders, especially the patients and getting their view is not actually that hard. To leave the last word to ALS Advocacy, “simply ask them“.

Until next month and with thanks to all the tweetchat participants (shown below), stay well.


To view a full transcript of the discussion from this #hcsmeu tweetchat held on 28th February 2014 please click here.

About the author:

Paul Tunnah is CEO & Founder of pharmaphorum media, which connects thought leaders and ideas across healthcare to support the pharmaceutical industry in delivering innovative medical solutions. It combines industry-leading strategic and tactical media services with the globally recognised news, information and insight portal pharmaphorum.com, working with pharmaceutical companies, service providers and broader healthcare organisations to help communicate their thought leadership and connect them with relevant stakeholders.

For queries he can be reached through the site contact form or on Twitter @pharmaphorum.

Closing thought: What are the real issues around patient data?